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  • 1.
    Abacan, MaryAnn
    et al.
    Univ Philippines Manila, Inst Human Genet, NIH, Manila, Philippines.
    Alsubaie, Lamia
    KASCH, King Abdulaziz Med City, Riyadh, Saudi Arabia.
    Barlow-Stewart, Kristine
    Univ Sydney, Fac Med & Hlth, Northern Clin Sch, Sydney, NSW, Australia.
    Caanen, Beppy
    Maastricht Univ, Dept Clin Genet, Med Ctr, Maastricht, Netherlands.
    Cordier, Christophe
    SYNLAB Genet, Dept Genet, Lausanne, Switzerland.
    Courtney, Eliza
    Natl Canc Ctr, Div Med Oncol, Canc Genet Serv, Singapore, Singapore.
    Davoine, Emeline
    Lausanne Univ Hosp CHUV, Lausanne, Switzerland.
    Edwards, Janice
    Univ South Carolina, Genet Counseling Program, Transnat Alliance Genet Counseling, Columbia, SC USA.
    Elackatt, Niby J.
    Cloudnine Hosp, Org Rare Dis India, Bangalore, Karnataka, India.
    Gardiner, Kate
    LifeLabs Genet, Toronto, ON, Canada.
    Guan, Yue
    Emory Univ, Rollins Sch Publ Hlth, Atlanta, GA USA.
    Huang, Lian-Hua
    China Med Univ, Sch Nursing, Taichung, Taiwan;Natl Taiwan Univ, Coll Med, Sch Nursing, Taipei, Taiwan.
    Ingvoldstad, Charlotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Karolinska Univ Hosp, Ctr Fetal Med & Clin Genet, Stockholm, Sweden;Karolinska Inst, Dept Clin Sci Intervent & Technol, Stockholm, Sweden.
    Kejriwal, Sahil
    Univ Washington, Inst Publ Hlth Genet, Seattle, WA USA.
    Kim, Hyon J.
    Ajou Univ, Med Sch, Suwon, South Korea;Konyang Univ, Grad Sch, Suwon, South Korea.
    Lambert, Deborah
    Natl Rare Dis Off, Dublin, Ireland.
    Lantigua-Cruz, Paulina Araceli
    Univ Med Sci Havana, Havana, Cuba.
    Lee, Juliana M. H.
    Natl Univ Malaysia, Kuala Lumpur, Malaysia.
    Lodahl, Marianne
    Copenhagen Univ Hosp, Rigshosp, Dept Clin Genet, Copenhagen, Denmark.
    Lunde, Ashild
    Univ Bergen, Dept Global Publ Hlth & Primary Care, Bergen, Norway.
    Macaulay, Shelley
    Univ Witwatersrand, Fac Hlth Sci, Div Human Genet, Johannesburg, South Africa;Natl Hlth Lab Serv, Johannesburg, South Africa.
    Macciocca, Ivan
    Victorian Clin Genet Serv, Melbourne, Vic, Australia.
    Margarit, Sonia
    Clin Alemana Univ Desarrollo, Fac Med, Ctr Genet & Genom, Santiago, Chile.
    Middleton, Anna
    Soc & Eth Res Connecting Sci, Wellcome Genome Campus, Cambridge, England;Univ Cambridge, Fac Educ, Cambridge, England.
    Moldovan, Ramona
    Babes Bolyai Univ, Dept Psychol, Cluj Napoca, Romania.
    Ngeow, Joanne
    Natl Canc Ctr, Div Med Oncol, Canc Genet Serv, Singapore, Singapore.
    Obregon-Tito, Alexandra J.
    Univ Arkansas Med Sci, Little Rock, AR 72205 USA.
    Ormond, Kelly E.
    Stanford Univ, Sch Med, Dept Genet, Stanford, CA USA;Stanford Univ, Sch Med, Stanford Ctr Biomed Eth, Stanford, CA USA;Stanford Univ, Sch Med, 300 Pasteur Dr,MC 5208, Stanford, CA USA.
    Paneque, Milena
    Univ Porto, CGPP Ctr Predict & Prevent Genet, I3S, Porto, Portugal;Univ Porto, IBMC Inst Mol & Cell Biol, Porto, Portugal.
    Powell, Karen
    Cone Hlth Canc Ctr, Greensboro, NC USA.
    Sanghavi, Kunal
    Jackson Lab Genom Med, Farmington, CT USA.
    Scotcher, Diana
    Manchester Univ Hosp NHS Fdn Trust, St Marys Hosp, Manchester Ctr Genom Med, Manchester, Lancs, England.
    Scott, Jenna
    Univ British Columbia, Vancouver, BC, Canada.
    Juhe, Clara Serra
    Univ Pompeu Fabra, Dept Ciencies Expt & Salut, Inst Hosp Mar Invest Med, Ctr Invest Biomed Red Enfermedades Raras, Barcelona, Spain.
    Shkedi-Rafid, Shiri
    Hadassah Hebrew Univ, Med Ctr, Jerusalem, Israel.
    Wessels, Tina-Marie
    Univ Cape Town, Div Human Genet, Cape Town, South Africa.
    Yoon, Sook-Yee
    Natl Univ Malaysia, Kuala Lumpur, Malaysia;Canc Res, Subang Jaya, Malaysia;Univ Malaya, Med Ctr, Kuala Lumpur, Malaysia.
    Wicklund, Catherine
    Northwestern Univ, Feinberg Sch Med, Chicago, IL 60611 USA.
    The Global State of the Genetic Counseling Profession2019In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, no 2, p. 183-197Article, review/survey (Refereed)
    Abstract [en]

    The profession of genetic counseling (also called genetic counselling in many countries) began nearly 50 years ago in the United States, and has grown internationally in the past 30 years. While there have been many papers describing the profession of genetic counseling in individual countries or regions, data remains incomplete and has been published in diverse journals with limited access. As a result of the 2016 Transnational Alliance of Genetic Counseling (TAGC) conference in Barcelona, Spain, and the 2017 World Congress of Genetic Counselling in the UK, we endeavor to describe as fully as possible the global state of genetic counseling as a profession. We estimate that in 2018 there are nearly 7000 genetic counselors with the profession established or developing in no less than 28 countries.

  • 2. Andersen, Janice
    et al.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Sandberg, Sverre
    Illness Perception and Psychological Distress in Persons with Porphyria Cutanea Tarda2016In: Acta Dermato-Venereologica, ISSN 0001-5555, E-ISSN 1651-2057, Vol. 96, no 5, p. 674-678Article in journal (Refereed)
    Abstract [en]

    Porphyria cutanea tarda (PCT) requires long-term treatment and follow-up, although many patients experience life-long remission. The aim of this cross-sectional postal survey was to describe and investigate the association between illness perception, health complaints, self-reported symptoms and distress in persons with PCT. The participants perceived PCT as a chronic condition with high levels of personal and treatment control. Persons who reported active symptoms scored higher on perceived illness threat, total health complaints and psychological distress compared with those in remission or latent phases. However, a higher perception of illness threat and the total burden of health complaints were more closely associated with psychological distress than were perceived PCT symptoms activity. This has implications for clinical consultation; dermatologists should be attentive to symptoms activity, but also recognize that patients in remission with a high perceived illness threat and multiple health complaints might be especially vulnerable to psychological distress with regards to PCT.

  • 3.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Röing, Marta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Ehrsson, Ylva Tiblom
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    It's a question of endurance: patients with head and neck cancer experiences of 18F-FDG PET/CT in a fixation mask2017In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 29, p. 85-90, article id S1462-3889(17)30082-0Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study aimed to explore how patients with head and neck cancer experienced undergoing an (18)F-fluoro-deoxy-glucose positrons emissions tomography/computed tomography ((18)F-FDG PET/CT) examination in a fixation mask.

    METHOD: Interviews were conducted with nine patients with known or suspected head and neck cancer who were scheduled for the examination for the first time. The phenomenological method according to van Manen and his four lifeworld existentials; lived space, lived body, lived time, and lived relation was used to analyse the interviews.

    RESULTS: The thoughts and feelings of the patients during the PET/CT examination varied, some found it very difficult, while others did not. However, for all the patients, it was an experience that required some form of coping to maintain composure for example distraction.

    CONCLUSIONS: PET/CT examnation in a fixation mask may be strenuous for some patients. Patients need more detailed information, including suggestions for coping behaviours, prior to the examination, as well as higher level of support during and after the examination. The results of this study may be used to improve patient care and optimize the procedure of PET/CT examination in a fixation mask.

  • 4.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Assmus, Jörg
    Thormodsen, Inger
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Early rehabilitation of cancer patients: An individual randomized stepped-care stress-management intervention.2019In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 28, no 2, p. 301-308Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To evaluate the effects of an individual stepped-care stress-management intervention for cancer patients on cancer-related stress reactions (intrusion/avoidance), and secondarily on psychological distress (anxiety/depression) and emotional reactivity (impatience/hostility).

    METHODS: Consecutively 291 cancer patients were included in a randomized controlled intervention study. Patients randomized to the intervention who did not report clinically significant stress levels (n = 72) after the first counseling session participated in only one counseling session and a follow-up (Step 1). The remaining patients (n = 66) received an additional three to eight sessions, depending on individual needs (Step 2). The intervention used techniques derived from cognitive behavioral therapy (CBT) such as daily registration of events and behaviors as well as scheduled behavioral and physical activity, along with short relaxation exercises. The intervention was completed within 26 weeks of inclusion. The Impact of Event Scale, Hospital Anxiety and Depression Scale, and Everyday Life Stress Scale were used to evaluate effects for 2 years.

    RESULTS: The linear mixed effects model analysis showed a difference between the randomization groups in favor of the intervention for avoidance and intrusion after the first 6 weeks (P = 0.001 and P = 0.003) and for emotional reactivity after 17 weeks (P = 0.007). There were no differences in psychological distress. Decreases in cancer-related stress reactions and depression were noted for the Step 2 intervention.

    CONCLUSIONS: An individual stepped-care stress-management intervention for cancer patients, performed by specially educated health professionals using techniques derived from CBT, seems beneficial for cancer patients and may therefore be a realistic complement to routine cancer care.

  • 5.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Rissanen, Ritva
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ahlgren, Johan
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Effects of a Stepped Care Stress Management Intervention on Cancer-Related Traumatic Stress Symptoms Among Breast Cancer Patients: A Randomized Study of Group Versus Individual Setting2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no Suppl. 3, p. 171-171, article id P1-0300Article in journal (Other academic)
  • 6.
    Bean, Christopher
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health.
    Kosmadopoulos, Anastasi
    Centre for Study and Treatment of Circadian Rhythms, Douglas Mental Health University Institute, Department of Psychiatry, McGill University, Montréal, QC, Canada.
    Hutchinson, Amanda
    School of Psychology, Social Work and Social Policy, University of South Australia, Adelaide, SA, Australia.
    Matthews, Raymond
    Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden.
    Sargent, Charli
    Appleton Institute for Behavioural Science, Central Queensland University, Adelaide, SA, Australia.
    Stengård, Johanna
    Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Berg, Noora
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Winefield, Helen
    School of Psychology, University of Adelaide, Adelaide, SA, Australia.
    Adams, Robert
    The Health Observatory, Discipline of Medicine, University of Adelaide, Adelaide, SA, Australia.
    Short sleep, psychosocial work stressors, and measures of obesity: results from an Australian cohort study2019Conference paper (Refereed)
    Abstract [en]

    Introduction: Short sleep and workplace stress are both established risk factors for overweight and obesity, yet few studies have considered how these two factors may intersect. The aim of this study was to establish the associations between these two exposures and their relative associations with body mass index (kg/m2 ) and waist circumference (cm).

    Methods: A cross-sectional design sampled current employees (N=423) from an Australian cohort using a computer-assisted telephone interview and clinic-measured height, weight, and waist circumference. Short sleep (≤6h/ night) was reported by 25.8% of the participants. Psychosocial work stressors were defined using the Job Demand-ControlSupport (JDCS) model and calculated at the subscale level (psychological demands; skill discretion; decision authority; coworker support; supervisor support). General linear models were used to assess associations between short sleep, the JDCS subscales (split at median), and BMI and waist circumference.

    Results: Separate analyses identified short sleep and a lack of skill discretion at work as predictors of both BMI and waist circumference. Furthermore, when both predictors were entered in the same model, each was associated with elevated BMI (b=1.79, p=.003; b=1.08, p=.045) and waist circumference (b=4.20, p=.005; b=2.97, p=.028). Short sleep was also associated with high perceived psychological demands at work (b=1.81, p=.003). All models were adjusted for gender, age, work hours, blue vs. white collar job, and household income.

    Discussion: These findings indicate the importance of considering the interplay between short sleep and psychosocial work stressors, and their respective associations with measures of overweight Sleep Sci. 2019;12(Supl.3):1-75 26 and obesity. Further research using longitudinal data is needed to model potential mechanisms (e.g., behavioral and physiological). A novel feature was the subscale consideration of the prominent JDCS model of work stress. Advocacy for both improved habitual sleep (e.g., ≥7h/night) and job redesign to increase skill discretion at work may promote lower levels of overweight and obesity for employees.

  • 7.
    Bean, Christopher
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health.
    Virtanen, Pekka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health.
    Virtanen, Marianna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health.
    Berg, Noora
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Hallqvist, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Preventive Medicine. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    Hammarström, Anne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health.
    Youth participation in Active Labour Market Programs (ALMPs) during boom/recession and mental health: a 20-year follow-up2019Conference paper (Refereed)
  • 8.
    Berg, Noora J.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Natl Inst Hlth & Welf, POB 30, Helsinki 00271, Finland.
    Kiviruusu, Olli H.
    Natl Inst Hlth & Welf, POB 30, Helsinki 00271, Finland.
    Lintonen, Tomi P.
    Finnish Fdn Alcohol Studies, Helsinki, Finland;Univ Tampere, Tampere, Finland.
    Huurre, Taina M.
    Natl Inst Hlth & Welf, POB 30, Helsinki 00271, Finland.
    Longitudinal prospective associations between psychological symptoms and heavy episodic drinking from adolescence to midlife2019In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 47, no 4, p. 420-427Article in journal (Refereed)
    Abstract [en]

    Aim: This study examined whether development of psychological symptoms (PS) differed between persons with different longitudinal profiles of heavy episodic drinking (HED) from adolescence to midlife. In addition, the reciprocal associations between PS and HED were studied. Methods: Participants of a Finnish cohort study in 1983 at age 16 (N = 2194) were followed up at ages 22 (N = 1656), 32 (N = 1471), and 42 (N = 1334). HED was assessed with frequency of intoxication (16-22 years) and having six or more drinks in a session (32-42 years). Using latent class analysis, the participants were allocated to steady high, increased, moderate, and steady low groups according to their longitudinal profiles of HED. The PS scale (16-42 years) covered five mental complaints. The latent growth curve of PS was estimated in the HED groups for comparisons. In addition, the prospective associations between symptoms and HED were examined using cross-lagged autoregressive models. Results: PS grew from 16 to 32 years, but declined after that, with women having higher level of PS than men. PS trajectory followed a path at highest and lowest level in the steady high and steady low HED groups, respectively. Symptoms predicted later HED, but the association in the opposite direction was not found. Conclusions: The more the HED trajectory indicated frequent HED, the higher was the level of PS throughout the follow-up. Results support the self-medication hypothesis, suggesting that alcohol is used to ease the burden of PS. More attention should be paid to alcohol use of people with mental symptoms in health services.

  • 9.
    Berg, Noora
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Virtanen, Marianna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health. University of Eastern Finland.
    Lintonen, Tomi
    Tampere University.
    Hammarström, Anne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Public Health. Stockholm University.
    The contribution of drinking culture at comprehensive school to heavy episodic drinking from adolescence to midlife2019In: European Journal of Public Health, ISSN 1101-1262, E-ISSN 1464-360XArticle in journal (Refereed)
    Abstract [en]

    Background

    The school context is associated with adolescent alcohol use, but it is not clear whether this association continues into adulthood. This study examined whether exposure to drunkenness oriented drinking culture in 9th grade school class is associated with individuals’ heavy episodic drinking (HED) from adolescence to midlife.

    Methods

    Participants in the ‘Northern Swedish Cohort’ study aged 16 years in 1981 were followed-up when aged 18, 21, 30 and 43 (N = 1080). Individual-level factors were HED, positive attitudes towards drunkenness, early initiation of HED and peer-oriented spare-time. School class-level drinking culture was measured as classmate reported HED, positive attitudes, early initiation of HED and peer-oriented spare time. Multilevel log-binomial regression analyses were adjusted for gender, parental socioeconomic background, family structure and HED at age 16.

    Results

    After adjustment for sociodemographic factors several cross-sectional and longitudinal associations were found between class-level indicators of drinking culture and individual HED. After additional adjustment for age 16 HED, most associations attenuated. The risk ratio (95% confidence interval) for engaging in HED at age 43 was 1.58 (1.03–2.42) times higher for those who at age 16 had many classmates reporting positive attitude towards drunkenness.

    Conclusions

    These findings suggest that drinking culture in school may have a long-lasting impact on drinking habits in adulthood. The associations with HED at follow-ups are likely mediated by HED in adolescence. Studies on alcohol use would benefit from taking into account both individual and contextual factors in a life course perspective.

  • 10.
    Berntsen, Sveinung
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Aaronson, Neil K
    Buffart, Laurien
    Börjeson, Sussanne
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Hellbom, Maria
    Hojman, Pernille
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Pingel, Ronnie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Raastad, Truls
    Velikova, Galina
    Åsenlöf, P.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Design of a randomized controlled trial of physical training and cancer (Phys-Can) - the impact of exercise intensity on cancer related fatigue, quality of life and disease outcome2017In: BMC Cancer, ISSN 1471-2407, E-ISSN 1471-2407, Vol. 17, no 1, article id 218Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cancer-related fatigue is a common problem in persons with cancer, influencing health-related quality of life and causing a considerable challenge to society. Current evidence supports the beneficial effects of physical exercise in reducing fatigue, but the results across studies are not consistent, especially in terms of exercise intensity. It is also unclear whether use of behaviour change techniques can further increase exercise adherence and maintain physical activity behaviour. This study will investigate whether exercise intensity affects fatigue and health related quality of life in persons undergoing adjuvant cancer treatment. In addition, to examine effects of exercise intensity on mood disturbance, adherence to oncological treatment, adverse effects from treatment, activities of daily living after treatment completion and return to work, and behaviour change techniques effect on exercise adherence. We will also investigate whether exercise intensity influences inflammatory markers and cytokines, and whether gene expressions following training serve as mediators for the effects of exercise on fatigue and health related quality of life.

    METHODS/DESIGN: Six hundred newly diagnosed persons with breast, colorectal or prostate cancer undergoing adjuvant therapy will be randomized in a 2 × 2 factorial design to following conditions; A) individually tailored low-to-moderate intensity exercise with or without behaviour change techniques or B) individually tailored high intensity exercise with or without behaviour change techniques. The training consists of both resistance and endurance exercise sessions under the guidance of trained coaches. The primary outcomes, fatigue and health related quality of life, are measured by self-reports. Secondary outcomes include fitness, mood disturbance, adherence to the cancer treatment, adverse effects, return to activities of daily living after completed treatment, return to work as well as inflammatory markers, cytokines and gene expression.

    DISCUSSION: The study will contribute to our understanding of the value of exercise and exercise intensity in reducing fatigue and improving health related quality of life and, potentially, clinical outcomes. The value of behaviour change techniques in terms of adherence to and maintenance of physical exercise behaviour in persons with cancer will be evaluated.

    TRIAL REGISTRATION: NCT02473003 , October, 2014.

  • 11.
    Berntsen, Sveinung
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Hetlelid, Ken J.
    Henriksson, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Phys-Can Feasibility Study: Objectively Recorded Physical Activity in Cancer Patients2014Conference paper (Other academic)
  • 12.
    Bjorke, Ann Christin Helgesen
    et al.
    Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Sweegers, Maike G.
    Vrije Univ, Amsterdam Univ, Amsterdam Publ Hlth Inst, Dept Epidemiol & Biostat,Med Ctr, Amsterdam, Netherlands;Vrije Univ, Amsterdam Univ, Canc Ctr Amsterdam, Med Ctr, Amsterdam, Netherlands.
    Buffart, Laurien M.
    Vrije Univ, Amsterdam Univ, Amsterdam Publ Hlth Inst, Dept Epidemiol & Biostat,Med Ctr, Amsterdam, Netherlands;Vrije Univ, Amsterdam Univ, Canc Ctr Amsterdam, Med Ctr, Amsterdam, Netherlands;Vrije Univ, Amsterdam Univ, Dept Med Oncol, Med Ctr, Amsterdam, Netherlands.
    Raastad, Truls
    Norwegian Sch Sport Sci, Oslo, Norway.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Which exercise prescriptions optimize V̇O2max during cancer treatment?: a systematic review and meta-analysis2019In: Scandinavian Journal of Medicine and Science in Sports, ISSN 0905-7188, E-ISSN 1600-0838, Vol. 29, no 9, p. 1274-1287Article, review/survey (Refereed)
    Abstract [en]

    The aims of the present systematic review and meta-analysis were to investigate the effect of exercise on maximal oxygen uptake ((V) over dot O(2)max) and to investigate whether exercise frequency, intensity, duration, and volume are associated with changes in (V) over dotO(2)max among adult patients with cancer undergoing treatment. Medline and Embase through OvidSP were searched to identify randomized controlled trials. Two reviewers extracted data and assessed the risk of bias. The overall effect size and differences in effects for different intensities and frequencies were calculated on change scores and post-intervention (V) over dot O(2)max data, and the meta-regression of exercise duration and volumes was analyzed using the Comprehensive Meta-Analysis software. Fourteen randomized controlled trials were included in the systematic review, comprising 1332 patients with various cancer types receiving (neo-) adjuvant chemo-, radio-, and/or hormone therapy. Exercise induced beneficial changes in (V) over dotO(2)max compared to usual care (effect size = 0.46, 95% Confidence Interval = 0.23-0.69). Longer session duration (P = 0.020), and weekly duration (P = 0.010), larger weekly volume (P < 0.001), and shorter intervention duration (P = 0.005) were significantly associated with more beneficial changes in (V) over dot O(2)max. No differences in effects between subgroups with respect to frequency and intensity were found. In conclusion, exercise has beneficial effects on (V) over dotO(2)max in patients with cancer undergoing (neo-) adjuvant treatment. As interventions with larger exercise volumes and longer session durations resulted in larger beneficial changes in (V) over dot O(2)max, exercise frequency, intensity, and duration should be considered carefully for sufficient exercise volume to induce changes in (V) over dot O(2)max for this patient group.

  • 13.
    Borjesson, Susanne
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Fjällskog, Marie-Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Endocrin Oncology.
    Peterson, Magnus
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Nurses’ experiences of taxane-induced pain in people treated for breast cancerIn: Article in journal (Other academic)
  • 14.
    Börjesson, Susanne
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Center for Clinical Research Dalarna.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Fjällskog, Marie-Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Endocrin Oncology.
    Rissanen, Ritva
    Karolinska Inst, Dept Publ Hlth Sci, Stockholm, Sweden.
    Peterson, Magnus
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Colored body images reveal the perceived intensity anddistribution of pain in women with breast cancer treated with adjuvant taxanes:: a prospective multi-method study of pain experience2018In: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, p. 581-591Article, review/survey (Refereed)
    Abstract [en]

    Background and aims:

    Breast cancer is the most prevalent adult cancer worldwide. A broader use of screening for early detection and adjuvant systemic therapy with chemotherapy has resulted in improved survival rates. Taxane-containing chemotherapy is one of the cornerstones of the treatment. However, taxane-containing chemotherapy may result in acute chemotherapy-induced nociceptive and neuropathic pain. Since this pain may be an additional burden for the patient both during and after taxane chemotherapy, it is important to rapidly discover and treat it. There is yet no gold standard for assessing taxane-induced pain. In the clinic, applying multiple methods for collecting information on pain may better describe the patients’ pain experiences. The aim was to document the pain during and after taxane through the contribution of different methods for collecting information on taxane-induced pain. Fifty-three women scheduled for adjuvant sequential chemotherapy at doses of ≥75 mg/m2 of docetaxel and epirubicin were enrolled in the study.

    Methods:

    Prospective pain assessments were done on a visual analog scale (VAS) before and during each cycle of treatment for about 5 months, and using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire’s (EORTC-QLQ-C30) two pain questions at baseline, 3 months, and 12 months. Participants scoring pain on the VAS >30 and undergoing an interview also colored their pain on a body image during treatment and at 12 months.

    Results:

    Surprisingly widespread, intense pain was detected using a multi-method approach. The colored body image showed pain being perceived on 51% of the body surface area during treatment, and on 18% 12 months after inclusion. In general, the pain started and peaked in intensity after the first cycle of taxane. After Cycle 3, most women reported an increase in pain on the VAS. Some women continued to report some pain even during the epirubicin cycles. The VAS scores dropped after the last chemotherapy cycle, but not to the baseline level. At baseline, 3 months and 12 months after inclusion, the women who estimated VAS >30 reported higher levels of pain on the pain questions of the EORTC-QLQ-C30.

    Conclusions:

    This study contributes information on how different pain assessment tools offer different information in the assessment of pain. The colored body image brings another dimension to pain diagnostics, providing additional information on the involved body areas and the pain intensities as experienced by the women. A multi-method approach to assessing pain offers many advantages. The timing of the assessment is important to properly assess pain.

    Implications:

    Pain relief needs to be included in the chemotherapy treatment, with individual assessment and treatment of pain, in the same way as is done in chemotherapy-triggered nausea. There is a time window whereby the risk of pain development is at its highest within 24–48 h after receiving taxane chemotherapy. Proper attention to pain evaluation and treatment should be in focus during this time window.

  • 15.
    Carlsson, Maria E.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Gunningberg, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Unavoidable pressure ulcers at the end of life and nurse understanding2017In: British Journal of Nursing, ISSN 0966-0461, E-ISSN 2052-2819, Vol. 26, no 20, p. s6-s17Article in journal (Refereed)
    Abstract [en]

    Objectives:

    prevention of pressure ulcers (PUs) in end-of-life care is often problematic because both PUs and interventions to prevent them can cause suffering. The primary aim of this study was to identify and describe the different ways in which nurses understood unavoidable PUs in late palliative care. A second aim was to explore the expediency of the different levels of understanding.

    Methods:

    a qualitative interview study with a phenomenographic approach was carried out. The study participants were nurses and healthcare assistants who worked in nursing homes or in specialist palliative inpatient care units run by private providers, non-profit foundations, municipalities and county councils. A phenomenographic analysis of the interview data was undertaken.

    Results:

    all participants shared a fundamental understanding that the prevention of PUs is highly worthwhile in end-of-life care. Within this common view, practitioners' understanding of whether PUs could be prevented differed in four main ways, and were divided into categories: A: unavoidable PUs do not exist. All can be prevented if all interventions are applied, and all patients are at the same risk for developing PUs in end-of-life care; B: unavoidable PUs do not exist, but some patients do not participate in prevention interventions, which makes prevention difficult. The risk of developing pressure ulcers in end-of-life care varies between patients; C: some PUs are unavoidable because some patients do not participate in prevention interventions; the risk of developing pressure ulcers in end-of-life care differs between patients. D: some PUs are unavoidable, depending on the pathophysiological processes in the dying body. The risk of developing pressure ulcers in end-of-life care differs between patients.

    Conclusion:

    it is paramount to communicate to nurses that not all PUs can be prevented in dying patients, to lessen the burden of ethical stress for the nurses.

  • 16.
    Demmelmaier, Ingrid
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Karolinska Inst, Stockholm, Sweden..
    Iversen, Maura D.
    Karolinska Inst, Stockholm, Sweden.;Northeastern Univ, Boston, MA 02115, Sweden.;Harvard Med Sch, Boston, MA, Sweden..
    How Are Behavioral Theories Used in Interventions to Promote Physical Activity in Rheumatoid Arthritis?: A Systematic Review2018In: Arthritis care & research, ISSN 2151-464X, E-ISSN 2151-4658, Vol. 70, no 2, p. 185-196Article, review/survey (Refereed)
    Abstract [en]

    ObjectiveTo identify the use of behavioral theories in physical activity interventions in populations with rheumatoid arthritis (RA). MethodsThis review includes articles published in English between January 1, 1980 and November 8, 2015 in MEDLINE, Cochrane, and CINAHL, identified by a strategic literature search. Included studies were published in international peer-reviewed journals, mentioned theory, evaluated a physical activity intervention for adults with RA, and had 1 physical activity variable as the outcome. References and reviews were also checked. Two investigators independently selected articles and extracted data using a validated scale, the theory coding scheme. Additional extracted data included author, sample characteristics, study design, physical activity outcomes, intervention type and duration, and control group. ResultsA total of 245 articles were identified, 211 articles and references were screened, and 29 articles were reviewed. Of these, 18 were excluded, leaving 11 articles with 1,472 participants (75% women). Ten studies (91%) were randomized controlled trials, 8 (73%) assessed physical activity plus self-management, and 3 (27%) physical activity only. Program durations ranged from 5 weeks to 1 year. Eight studies (73%) used a single theory, 7 studies (64%) linked at least 1 intervention technique to theory, 2 studies (18%) analyzed mediating effects of theoretical constructs, and 5 studies (45%) discussed results in relation to theory. ConclusionFindings indicate that physical activity intervention studies claiming the use of behavioral theories use theory to a small extent. We suggest expanding theory use in design, evaluation, and interpretation of physical activity intervention results. Further, we recommend that future studies evaluate the most salient behavioral theories, interventions components, and delivery modes in RA populations.

  • 17.
    Emilson, Christina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Bergman, Stefan
    Institutionen för medicin, avdelningen för samhällsmedicin och folkhälsa, Göteborgs universitet.
    Pettersson, Susanne
    Department of Rheumatology, Karolinska university hospital.
    Åsenlöf, Pernilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Concurrent validity and stability of subgroup assignment based on three levels of pain condition severity in patients with musculoskeletal painIn: Article in journal (Refereed)
    Abstract [en]

    Pain screening instruments have been used to identify risk factors for poor prognosis and are recommended for the stratification of treatment for musculoskeletal pain. The aim of this study was to investigate the concurrent validity of subgroup assignment based on the Örebro Musculoskeletal Pain Screening Questionnaire compared with reference instruments: The Pain Disability Index, the Tampa Scale for Kinesiophobia, and the Pain Catastrophizing Scale. A secondary aim was to investigate the stability of the subgroup assignment over a defined period of time. Participants (n=40) aged 18-65 years were recruited from five primary health care centers in Sweden. Data were collected using self-reported questionnaires. The subgroups based on the Örebro Musculoskeletal Pain Screening Questionnaire were predefined to low, moderate or high pain condition severity. The reference instrument data were dichotomized into low or high level based on previously used cut-off scores. Concurrent validity was analyzed with Fisher´s exact test. Stability was calculated using quadraticweighted kappa analysis. The results indicated acceptable psychometric properties of the subgroup assignment based on the Örebro Musculoskeletal Pain Screening Questionnaire regarding concurrent validity, and the stability over two to three weeks. To further increase validity, it is suggested that subgroup assignment is complemented with other measures assessing e.g. pain catastrophizing. In conclusion, assignment to subgroups with low, moderate and high pain condition severities based on the Örebro Musculoskeletal Pain Screening Questionnaire, could be used as a valid base for stratified treatment for patients with musculoskeletal pain.   

  • 18.
    Emilson, Christina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Åsenlöf, Pernilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Bergman, Stefan
    Institutionen för medicin, avdelningen för samhällsmedicin och folkhälsa, Göteborgs universitet; Spenshult Research and Development Centre, Halmstad, Sweden.
    Association between health care utilization and musculoskeletal pain. A 21-year follow-up of a population cohortIn: Article in journal (Refereed)
    Abstract [en]

    Background: Few studies have reported the long-term impact of pain on health care utilization. The aim of this study was to describe and predict health care utilization associated with chronic pain in a 21-year follow-up of a population cohort and to identify and describe different trajectories over time.                                                                              Methods: A prospective cohort design was used that included five measurement time points. A representative sample of 3928 subjects (age 20-74) from the south of Sweden was selected. Data were collected by self-reported questionnaires, and the response rate was n=2425 (62%). Three time points of 1995, 2007 and 2016 were included in the study. The associations between baseline variables and health care utilization in 2016 were calculated based on logistic regression analysis. Different trajectories for health care utilization were compared and described.                                                             Results: The response rate in 2016 was n=1184 (63%) of the eligible participants. Predictors for high health care utilization at the 21-year follow-up was chronic widespread pain (OR: 3.2, CI: 1.9-5.1), chronic regional pain (OR:1.8, CI: 1.2-2.6), female gender and high age. Trajectory for high health care utilization over the entire period was characterized by high prevalence of chronic pain at baseline and female gender.                                                                                                                     Conclusions: Chronic pain, which may reflect poorer general health, had implications in health care utilization over a 21-year period. A stable high health care utilization trajectory was identified among a small group of the general population characterized by chronic widespread pain and female gender, indicating that treatment of this group has not been successful.

  • 19.
    Godskesen, Tove
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal University College.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials2015In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, no 1, p. 133-141Article in journal (Refereed)
    Abstract [en]

    It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.

  • 20.
    Godskesen, Tove
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal University College.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Bergen, Dept Global Publ Hlth & Primary Care, Bergen, Norway.
    Silen, Marit
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials2016In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, no 3, p. 516-523Article in journal (Refereed)
    Abstract [en]

    While participants in clinical oncology trials are essential for the advancement of cancer therapies, factors decisive for patient participation have been described but need further investigation, particularly in the case of phase 3 studies. The aim of this study was to investigate differences in trial knowledge and motives for participation in phase 3 clinical cancer trials in relation to gender, age, education levels and former trial experience. The results of a questionnaire returned from 88 of 96 patients (92%) were analysed using the Mann-Whitney U-test. There were small, barely relevant differences in trial knowledge among patients when stratified by gender, age or education. Participants with former trial experience were less aware about the right to withdraw. Male participants and those aged ≥65 years were significantly more motivated by a feeling of duty, or by the opinions of close ones. Men seem more motivated than women by external factors. With the awareness that elderly and single male participants might be a vulnerable group and participants with former trial experience are less likely to be sufficiently informed, the information consent process should focus more on these patients. We conclude that the informed consent process seems to work well, with good results within most subgroups.

  • 21.
    Hartwig, Tanja Schlaikjaer
    et al.
    Copenhagen Univ Hosp Hvidovre, Dept Obstet & Gynecol, Fetal Med Unit, Kettegaard Alle 30, DK-2650 Hvidovre, Denmark.
    Miltoft, Caroline Borregaard
    Rigshosp, Copenhagen Univ Hosp, Ctr Fetal Med, Dept Obstet, Copenhagen, Denmark.
    Ingvoldstad Malmgren, Charlotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Karolinska Inst, Dept Clin Sci Intervent & Technol, Solna, Sweden;Karolinska Univ Hosp, Ctr Fetal Med, Solna, Sweden.
    Tabor, Ann
    Rigshosp, Copenhagen Univ Hosp, Ctr Fetal Med, Dept Obstet, Copenhagen, Denmark.
    Jörgensen, Finn Stener
    Copenhagen Univ Hosp Hvidovre, Dept Obstet & Gynecol, Fetal Med Unit, Kettegaard Alle 30, DK-2650 Hvidovre, Denmark.
    High risk-What's next?: A survey study on decisional conflict, regret, and satisfaction among high-risk pregnant women making choices about further prenatal testing for fetal aneuploidy2019In: Prenatal Diagnosis, ISSN 0197-3851, E-ISSN 1097-0223, Vol. 39, no 8, p. 635-642Article in journal (Refereed)
    Abstract [en]

    Objectives: To investigate decision making among pregnant women when choosing between noninvasive prenatal testing, invasive testing, or no further testing.

    Methods: Women with a high-risk result from the first trimester screening were invited to fill in two online questionnaires at gestational age 12 to 14 (Q1) and 24 weeks (Q2). The scales used were Decisional Conflict and Regret Scales, Satisfaction with genetic Counselling Scale, and Health-Relevant Personality Inventory.

    Results: Three hundred thirty-nine women agreed to participate, and the response rates were 76% on Q1 and 88% on Q2. A percentage of 75.4% chose an invasive test, 23.8% chose noninvasive prenatal testing (NIPT), 0.4% chose no further testing, and 0.4% had both NIPT and invasive testing. Among all participants, 13.3% had a high level of decisional conflict. We found that choosing NIPT was associated with a high decisional conflict (p = 0.013), receiving genetic counselling the same day was associated with a high decisional conflict (p = 0.039), and a high satisfaction with the genetic counselling was associated with low decisional conflict (p < 0.001). Furthermore, the personality subtrait alexithymia was associated with low decisional conflict (p = 0.043). There was a significant association between high decisional conflict and later decisional regret (p = 0.008).

    Conclusion: We present evidence that satisfaction with and timing of counselling are important factors to limit decisional conflict. Interestingly, women choosing NIPT had more decisional conflict than women choosing invasive testing.

  • 22.
    Hellerstedt Börjesson, Susanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Taxane-induced pain: Experiences of women with breast cancer and nurses providing their care2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Breast cancer patients receiving taxane chemotherapy run a substantial risk of develop taxane-induced pain, but little is known about women’s experiences of such pain. The aim of this thesis was to explore women’s acute and longstanding experiences of taxane-induced pain, to evaluate the pain intensity and distribution using different assessment methods, and to study nurses´ perceptions of taxane-induced pain in people with breast cancer.

    The women experienced pain during chemotherapy with 37– 48% incidence of acute taxane-induced pain. The subjective burden of taxane-induced pain described by the women covered narratives from manageable pain to very difficult and disabling pain with a major impact on their lifeworld (Study I).

    Longstanding pain in the lifeworld of women with previous breast cancer, was explored through a retrospective reflection after 12 months. The descriptions of pain revealed a time perspective; as pain perceived at that specific time, currently ongoing pain, and pain expectations for the future. This resulted in the women sensing themselves of being somewhere between health and illness gazing into an uncertain future (Study II).

    A quantitative longitudinal assessment of taxane-induced pain using; the body image, the VAS, and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30) showed the women’s estimated pain; its intensity, distribution and occurrence - as it appeared during the actual taxane treatment and up to a year afterward. The baseline measurement on the VAS revealed low initial pain, VAS <10, which changed at treatment Cycle 1. The body image revealed intense and widespread pain, and pain after 12 months, as did the EORTC QLQ -C30 (Study III).

    The nurses’ estimations of taxane-induced pain varied to large extent in both prevalence and intensity. Large parts of the body were expected to be involved in the pain. Nurses lacked local and/or national guidelines reflecting a low level of generalized use of prophylaxis against taxane pain (Study IV).

    In conclusion, taxane-induced pain is a common debilitating symptom during taxane chemotherapy for women with breast cancer. Pain impacts women´s life during as well as long time after the completion of taxane treatment. Taxane pain can be accurately or successfully estimated using various pain assessment tools. Furthermore, guidelines for dealing with taxane-induced pain are needed.

    List of papers
    1. Women With Breast Cancer: Experience of Chemotherapy-Induced Pain: Triangulation of Methods
    Open this publication in new window or tab >>Women With Breast Cancer: Experience of Chemotherapy-Induced Pain: Triangulation of Methods
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    2015 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 38, no 1, p. 31-39Article in journal (Refereed) Published
    Abstract [en]

    BACKGROUND

    Chemotherapy treatment for cancer diseases can cause body pain during adjuvant therapy.

    OBJECTIVE

    The aim was to describe the perceived impact of adjuvant chemotherapy-induced pain (CHIP) on the daily lives of women with newly diagnosed breast cancer, using triangulation.

    METHOD

    Fifty-seven women scheduled for chemotherapy in doses of 75 mg/m2 or greater of epirubicin and/or docetaxel participated. Twenty-two of these women registered pain with values of 4 or more on the visual analog scale on day 10 following chemotherapy. Of these 22, 16 participated in an interview and colored a printed body image. A qualitative thematic stepwise analysis of the interviews was performed.

    RESULTS

    Chemotherapy-induced pain had a profound impact on daily life. Ten women reported the worst possible pain, with visual analog scale scores of 8 to 10. Three different categories crystallized: perception (A) of manageable pain, which allowed the women to maintain their daily lives; perception (B) of pain beyond imagination, whereby the impact of pain had become more complex; and perception (C) of crippling pain, challenging the women's confidence in survival.

    CONCLUSIONS

    The findings highlight the inability to capture CHIP with 1 method only; it is thus necessary to use complimentary methods to capture pain. We found that pain had a considerable impact on daily life, with surprisingly high scores of perceived pain, findings that to date have been poorly investigated qualitatively.

    IMPLICATIONS FOR PRACTICE

    Nurses need to (1) better identify, understand and treat CHIP, using instruments and protocols; and (2) provide improved communication about pain and pain management.

    National Category
    Other Medical Sciences Cancer and Oncology
    Identifiers
    urn:nbn:se:uu:diva-224617 (URN)10.1097/NCC.0000000000000124 (DOI)000346161400010 ()24457228 (PubMedID)
    Available from: 2014-05-15 Created: 2014-05-14 Last updated: 2018-10-05Bibliographically approved
    2. Women Treated for Breast Cancer, Experiences of Chemotherapy-Induced Pain:: Memories, Any Present Pain and Future reflections
    Open this publication in new window or tab >>Women Treated for Breast Cancer, Experiences of Chemotherapy-Induced Pain:: Memories, Any Present Pain and Future reflections
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    2016 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 39, no 6, p. 464-472Article in journal (Refereed) Published
    Abstract [en]

    BACKGROUND: Breast cancer survivors make up a growing population facing treatment that poses long-standing adverse effects including chemotherapy-related body function changes and/or pain. There is limited knowledge of patients' lived experiences of chemotherapy-induced pain (CHIP).

    OBJECTIVE: The aim of this study was to explore CHIP and any long-standing pain experiences in the lifeworld of breast cancer survivors.

    METHODS: Fifteen women participated in a follow-up interview a year after having experienced CHIP. They were interviewed from a lifeworld perspective; the interviews were analyzed through guided phenomenology reflection.

    RESULTS: A past perspective: CHIP is often described in metaphors, leads to changes in a patient's lifeworld, and impacts lived time. The women become entirely dependent on others but at the same time feel isolated and alone. Existential pain was experienced as increased vulnerability. Present perspective: Pain engages same parts of the body, but at a lower intensity than during CHIP. The pain creates time awareness. Expected normality in relationships/daily life has not yet been achieved, and a painful existence emerges in-between health and illness. Future perspective: There are expectations of pain continuing, and there is insecurity regarding whom to turn to in such cases. A painful awareness emerges about one's own and others' fragile existence.

    CONCLUSIONS: Experiencing CHIP can impact the lifeworld of women with a history of breast cancer. After CHIP, there are continued experiences of pain that trigger insecurity about whether one is healthy.

    IMPLICATIONS FOR PRACTICE: Cancer survivors would likely benefit from communication and information about and evaluation of CHIP.

    National Category
    Nursing
    Identifiers
    urn:nbn:se:uu:diva-268691 (URN)10.1097/NCC.0000000000000322 (DOI)000387114100012 ()26632880 (PubMedID)
    Funder
    Swedish Cancer Society, 10 0001
    Available from: 2015-12-09 Created: 2015-12-09 Last updated: 2018-10-05Bibliographically approved
    3. Colored body images reveal the perceived intensity anddistribution of pain in women with breast cancer treated with adjuvant taxanes:: a prospective multi-method study of pain experience
    Open this publication in new window or tab >>Colored body images reveal the perceived intensity anddistribution of pain in women with breast cancer treated with adjuvant taxanes:: a prospective multi-method study of pain experience
    Show others...
    2018 (English)In: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, p. 581-591Article, review/survey (Refereed) Published
    Abstract [en]

    Background and aims:

    Breast cancer is the most prevalent adult cancer worldwide. A broader use of screening for early detection and adjuvant systemic therapy with chemotherapy has resulted in improved survival rates. Taxane-containing chemotherapy is one of the cornerstones of the treatment. However, taxane-containing chemotherapy may result in acute chemotherapy-induced nociceptive and neuropathic pain. Since this pain may be an additional burden for the patient both during and after taxane chemotherapy, it is important to rapidly discover and treat it. There is yet no gold standard for assessing taxane-induced pain. In the clinic, applying multiple methods for collecting information on pain may better describe the patients’ pain experiences. The aim was to document the pain during and after taxane through the contribution of different methods for collecting information on taxane-induced pain. Fifty-three women scheduled for adjuvant sequential chemotherapy at doses of ≥75 mg/m2 of docetaxel and epirubicin were enrolled in the study.

    Methods:

    Prospective pain assessments were done on a visual analog scale (VAS) before and during each cycle of treatment for about 5 months, and using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire’s (EORTC-QLQ-C30) two pain questions at baseline, 3 months, and 12 months. Participants scoring pain on the VAS >30 and undergoing an interview also colored their pain on a body image during treatment and at 12 months.

    Results:

    Surprisingly widespread, intense pain was detected using a multi-method approach. The colored body image showed pain being perceived on 51% of the body surface area during treatment, and on 18% 12 months after inclusion. In general, the pain started and peaked in intensity after the first cycle of taxane. After Cycle 3, most women reported an increase in pain on the VAS. Some women continued to report some pain even during the epirubicin cycles. The VAS scores dropped after the last chemotherapy cycle, but not to the baseline level. At baseline, 3 months and 12 months after inclusion, the women who estimated VAS >30 reported higher levels of pain on the pain questions of the EORTC-QLQ-C30.

    Conclusions:

    This study contributes information on how different pain assessment tools offer different information in the assessment of pain. The colored body image brings another dimension to pain diagnostics, providing additional information on the involved body areas and the pain intensities as experienced by the women. A multi-method approach to assessing pain offers many advantages. The timing of the assessment is important to properly assess pain.

    Implications:

    Pain relief needs to be included in the chemotherapy treatment, with individual assessment and treatment of pain, in the same way as is done in chemotherapy-triggered nausea. There is a time window whereby the risk of pain development is at its highest within 24–48 h after receiving taxane chemotherapy. Proper attention to pain evaluation and treatment should be in focus during this time window.

    Place, publisher, year, edition, pages
    Berlin/Boston: , 2018
    National Category
    Cancer and Oncology
    Research subject
    Caring Sciences
    Identifiers
    urn:nbn:se:uu:diva-356212 (URN)10.1515/sjpain-2018-0050 (DOI)000451213600006 ()29949517 (PubMedID)
    Funder
    Swedish Cancer Society, 100001
    Available from: 2018-07-23 Created: 2018-07-23 Last updated: 2019-01-18Bibliographically approved
    4. Nurses’ experiences of taxane-induced pain in people treated for breast cancer
    Open this publication in new window or tab >>Nurses’ experiences of taxane-induced pain in people treated for breast cancer
    Show others...
    (English)In: Article in journal (Other academic) Submitted
    National Category
    Nursing
    Research subject
    Caring Sciences
    Identifiers
    urn:nbn:se:uu:diva-362508 (URN)
    Available from: 2018-10-05 Created: 2018-10-05 Last updated: 2018-10-10
  • 23.
    Hellerstedt-Börjesson, Susanne
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Fjällskog, Marie-Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Endocrine oncology.
    Holmström, Inger K
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research. Malardalen Univ, Sch Hlth Care & Social Welf, Vasteras, Sweden.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Women Treated for Breast Cancer, Experiences of Chemotherapy-Induced Pain:: Memories, Any Present Pain and Future reflections2016In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 39, no 6, p. 464-472Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Breast cancer survivors make up a growing population facing treatment that poses long-standing adverse effects including chemotherapy-related body function changes and/or pain. There is limited knowledge of patients' lived experiences of chemotherapy-induced pain (CHIP).

    OBJECTIVE: The aim of this study was to explore CHIP and any long-standing pain experiences in the lifeworld of breast cancer survivors.

    METHODS: Fifteen women participated in a follow-up interview a year after having experienced CHIP. They were interviewed from a lifeworld perspective; the interviews were analyzed through guided phenomenology reflection.

    RESULTS: A past perspective: CHIP is often described in metaphors, leads to changes in a patient's lifeworld, and impacts lived time. The women become entirely dependent on others but at the same time feel isolated and alone. Existential pain was experienced as increased vulnerability. Present perspective: Pain engages same parts of the body, but at a lower intensity than during CHIP. The pain creates time awareness. Expected normality in relationships/daily life has not yet been achieved, and a painful existence emerges in-between health and illness. Future perspective: There are expectations of pain continuing, and there is insecurity regarding whom to turn to in such cases. A painful awareness emerges about one's own and others' fragile existence.

    CONCLUSIONS: Experiencing CHIP can impact the lifeworld of women with a history of breast cancer. After CHIP, there are continued experiences of pain that trigger insecurity about whether one is healthy.

    IMPLICATIONS FOR PRACTICE: Cancer survivors would likely benefit from communication and information about and evaluation of CHIP.

  • 24.
    Hellerstedt-Börjesson, Susanne
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Fjällskog, Marie-Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Holmström, Inger K
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Women With Breast Cancer: Experience of Chemotherapy-Induced Pain: Triangulation of Methods2015In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 38, no 1, p. 31-39Article in journal (Refereed)
    Abstract [en]

    BACKGROUND

    Chemotherapy treatment for cancer diseases can cause body pain during adjuvant therapy.

    OBJECTIVE

    The aim was to describe the perceived impact of adjuvant chemotherapy-induced pain (CHIP) on the daily lives of women with newly diagnosed breast cancer, using triangulation.

    METHOD

    Fifty-seven women scheduled for chemotherapy in doses of 75 mg/m2 or greater of epirubicin and/or docetaxel participated. Twenty-two of these women registered pain with values of 4 or more on the visual analog scale on day 10 following chemotherapy. Of these 22, 16 participated in an interview and colored a printed body image. A qualitative thematic stepwise analysis of the interviews was performed.

    RESULTS

    Chemotherapy-induced pain had a profound impact on daily life. Ten women reported the worst possible pain, with visual analog scale scores of 8 to 10. Three different categories crystallized: perception (A) of manageable pain, which allowed the women to maintain their daily lives; perception (B) of pain beyond imagination, whereby the impact of pain had become more complex; and perception (C) of crippling pain, challenging the women's confidence in survival.

    CONCLUSIONS

    The findings highlight the inability to capture CHIP with 1 method only; it is thus necessary to use complimentary methods to capture pain. We found that pain had a considerable impact on daily life, with surprisingly high scores of perceived pain, findings that to date have been poorly investigated qualitatively.

    IMPLICATIONS FOR PRACTICE

    Nurses need to (1) better identify, understand and treat CHIP, using instruments and protocols; and (2) provide improved communication about pain and pain management.

  • 25.
    Henriksson, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Perceived barriers to and facilitators of being physically active during adjuvant cancer treatment2016In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 99, no 7, p. 1220-1226Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim was to describe cancer patients' perceived barriers and facilitators of physical activity during adjuvant cancer treatment.

    METHODS: Semi-structured focus group interviews were conducted with patients with breast cancer (n=9) and colorectal cancer (n=1) and prostate cancer (n=8) undergoing adjuvant cancer treatment. To capture perceived barriers and facilitators before starting treatment, individual interviews with women with breast cancer (n=5) were also conducted. 23 patients in total, were interviewed, and the transcribed interviews were analysed with qualitative content analysis.

    RESULTS: Three categories emerged: "Physical and emotional barriers"-addresses experiences of side-effects, co-morbid conditions and emotional barriers, preventing physical activity (PA). "Perspective and attitudes"-how self-efficacy, self-image, preference, concerns, expectations, experience and new perspective regarding one's health influencing PA. "Support and practicalities"-addresses needs of support and information and how practicalities could be a barrier to PA.

    CONCLUSIONS: Several barriers were side effects of oncological treatment, which can be alleviated by PA. Another barrier was concerns regarding safety of PA during treatment. Communicating benefits and safety of PA to cancer patients early as possible after diagnosis might be beneficial.

    PRACTICE IMPLICATIONS: Information about PA from health care staff should be given early after diagnosis and as a part of standard care.

  • 26.
    Henriksson, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Phys-Can Feasibility Study: Perceived Barriers and Facilities to Exercise During Adjuvant Cancer Treatment2014Conference paper (Other academic)
  • 27.
    Igelström, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Exercise during and after curative oncological treatment: a mapping review2017In: Physical Therapy Reviews, ISSN 1083-3196, E-ISSN 1743-288X, Vol. 22, no 3/4, p. 103-115Article in journal (Refereed)
    Abstract [en]

    Background: By mapping the existing literature on exercise oncology, gaps in knowledge can be identified, and future directions for research can be pointed out.

    Objectives: This review aimed to map diagnoses and outcome measures targeted in reviews and describe the effects on those outcomes. Further, the aim was to map exercise intervention characteristics being reviewed and the effects depending on these characteristics, and to discuss implications for future research.

    Methods: A systematic search was performed in PubMed, Cinahl, PSYCHInfo, and Cochrane Library. Reviews including physical activity and exercise intervention trials in adult patients during or after curative oncological treatment were included. Reference lists were scanned in order to find additional relevant papers.

    Results: Twenty-three reviews were included in the present study. The majority included mixed forms of cancers. Significant improvements were reported on physical fitness, cancer-related fatigue (CRF), health-related quality of life, physical function, psychological outcomes, lymphedema-related symptoms, biological markers, and physical activity level. Four reviews targeted time point for implementation of exercise intervention. There were slightly greater effects on CRF, physical fitness, and walking distance from implementation after completed treatment. Two reviews comparing exercise types reported superior effects from combinations of aerobic exercise and resistance training compared to aerobic or resistance training alone. One review targeted exercise intensity, and the results indicated a greater effect from moderately intense exercise compared to high intense exercise. One review assessed behaviour change techniques in exercise trials and suggested the use of programme goal-setting, self-monitoring, and generalization of behaviour to promote adoption and maintenance of exercise behaviour.

    Conclusion: Exercise seems to be beneficial during and after curative oncological treatment in several types of cancer. A higher reporting of exercise intervention details is essential in future exercise intervention trials and there is still a need for large, randomized trials, especially in forms of cancer other than breast cancer.

  • 28.
    Igelström, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Hetlelid, Ken
    Åsenlöf, Pernilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Henriksson, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Phys-Can feasibility Study: Preparing for Physical Training and Behavioral Medicine Strategies2014Conference paper (Other academic)
  • 29.
    Isaksson, Stina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Skoog Svanberg, Agneta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Sydsjö, G.
    Division of Obstetrics and Gynaecology, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linköping University, Sweden.
    Thurin-Kjellberg, A.
    Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Karlström, Per-Olof
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Solensten, N-G
    IVF-clinic Umea in Collaboration with Umea University Hospital, Sweden.
    Lampic, C.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Huddinge, Sweden.
    Two decades after legislation on identifiable donors in Sweden: Are recipient couples ready to be open about using gamete donation?2011In: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 26, no 4, p. 853-860Article in journal (Refereed)
    Abstract [en]

    BACKGROUND

    Two decades after the introduction of Swedish legislation that allows children born as a result of gamete donation access to identifying information about the donor, a nationwide multicentre study on the psychosocial consequences of this legislation for recipients and donors of gametes was initiated in 2005. The aim of the present study was to investigate recipient couples' attitudes and behaviour regarding disclosure to offspring and others, attitudes towards genetic parenthood and perceptions of information regarding parenthood after donation.

    METHODS

    The present study is part of the prospective longitudinal 'Swedish study on gamete donation', including all fertility clinics performing donation treatment in Sweden. A consecutive cohort of 152 heterosexual recipient couples of donated oocytes (72% response) and 127 heterosexual recipient couples of donated sperm (81% response) accepted participation in the study. In connection with the donation treatment, male and female participants individually completed two questionnaires with study-specific instruments concerning disclosure, genetic parenthood and informational aspects.

    RESULTS

    About 90% of participants (in couples receiving anonymous donated gametes) supported disclosure and openness to the offspring concerning his/her genetic origin. Only 6% of all participants had not told other people about their donation treatment. Between 26 and 40% of participants wanted additional information/support about parenthood following donation treatment.

    CONCLUSIONS

    Two decades after the Swedish legislation of identifiable gamete donors, recipient couples of anonymously donated sperm and oocytes are relatively open about their treatment and support disclosure to offspring. Recipient couples may benefit from more information and support regarding parenthood after gamete donation. Further studies are required to follow-up on the future parents' actual disclosure behaviour directed to offspring.

  • 30.
    Isaksson, Stina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Skoog Svanberg, Agneta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Sydsjö, Gunilla
    Linell, Lovisa
    Lampic, Claudia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    It takes two to tango: Information-sharing with offspring among heterosexual parents following identity-release sperm donation.2016In: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 31, no 1, p. 125-132Article in journal (Refereed)
    Abstract [en]

    STUDY QUESTION How do heterosexual parents reason about and experience information-sharing with offspring following identity-release sperm donation?

    SUMMARY ANSWER Sharing information about using donor-conception with offspring is a complex process at several levels, with the parent's personal beliefs and the child's responses serving as driving or impeding forces for the information-sharing process.

    WHAT IS KNOWN ALREADY The overall view of disclosure in gamete donation has shifted from secrecy to openness, but there is still uncertainty among parents concerning how and when to tell the child about his/her genetic origin. Most research on donor-conceived families has focused on donation treatment under anonymous or known circumstances, and there is a lack of studies in settings with identity-release donations.

    STUDY DESIGN, SIZE, DURATION A qualitative interview study among 30 parents following identity-release sperm donation treatment. Interviews were conducted from February 2014 to March 2015.

    PARTICIPANTS/MATERIALS, SETTING, METHODS The present study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD), including all fertility clinics performing gamete donation in Sweden. A sample of participants in the SSGD, consisting of heterosexual parents with children aged 7–8 years following identity-release sperm donation, participated in individual semi-structured interviews.

    MAIN RESULTS AND THE ROLE OF CHANCE The analysis revealed one main theme: information-sharing is a process, with three subthemes; (i) the parent as process manager, (ii) the child as force or friction and (iii) being in the process. The first two subthemes were viewed as being linked together and their content served as driving or impeding forces in the information-sharing process.

    LIMITATIONS, REASONS FOR CAUTION The fact that the study was performed within the context of the Swedish legislation on identity-release donation must be taken into consideration as regards transferability to other populations, as this may affect parents' reasoning concerning their information-sharing with the child.

    WIDER IMPLICATIONS OF THE FINDINGS The present findings highlight the role of the donor-conceived child in the information-sharing process and may contribute to develop counselling that increases parents' confidence in handling children's reactions to information about their genetic origin.

  • 31.
    Isaksson, Stina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Sydsjö, Gunilla
    Division of Obstetrics and Gynaecology, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linkoping University.
    Skoog Svanberg, Agneta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Lampic, Claudia
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge.
    Disclosure behaviour and intentions among 111 couples following treatment with oocytes or sperm from identity-release donors: follow-up at offspring age 1-4 years2012In: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 27, no 10, p. 2998-3007Article in journal (Refereed)
    Abstract [en]

    STUDY QUESTION:

    Do heterosexual parents of young children following oocyte donation (OD) and sperm donation (SD) tell or intend to tell their offspring about the way he/she was conceived?

    SUMMARY ANSWER:

    Following successful treatment with oocytes or sperm from identity-release donors in Sweden, almost all heterosexual couples intend to tell their offspring about the way he/she was conceived and some start the information-sharing process very early.

    WHAT IS KNOWN AND WHAT THIS PAPER ADDS:

    Although the Swedish legislation on identity-release gamete donors has been in effect since 1985, there is a discrepancy between the behaviour of donor-insemination parents and the legal intention that offspring be informed about their genetic origin. The present study contributes data on a relatively large sample of oocyte and sperm recipient couples' intended compliance with the Swedish legislation.

    DESIGN AND DATA COLLECTION METHOD:

    The present study constitutes a follow-up assessment of heterosexual couples who had given birth to a child following treatment with donated oocytes. Data collection was performed during 2007-2011; participants individually completed a questionnaire when the child was between 1 and 4 years of age.

    PARTICIPANTS AND SETTING:

    The present study is part of the Swedish Study on Gamete Donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. For children conceived via OD, 107 individuals (including 52 couples and 3 individuals) agreed to participate (73% response). For children conceived via SD, the response rate was 70% (n = 122 individuals, including 59 couples and 4 individuals). Mean age of participants was 34 years (SD 4.4) and they reported a high level of education.

    MAIN RESULTS:

    The majority of participants (78%) planned to tell the child about the donation, 16% had already started the information-sharing process and 6% planned not to tell their child about the donation or were undecided. Many were unsure about a suitable time to start the disclosure process and desired more information about strategies and tools for information sharing. Agreement on disclosure to offspring within the couple was related to the quality of the partner relationship.

    BIAS AND GENERALIZABILITY:

    There is a risk of selection bias, with gamete recipients preferring secrecy and non-disclosure declining study participation. The results may be regarded as partly generalizable to heterosexual couples with young children following treatment with gametes from legislatively mandated identity-release donors in an established donor programme.

    STUDY FUNDING/COMPETING INTERESTS:

    Study funding by Merck Serono, The Swedish Research Council and The Family Planning Fund in Uppsala. No conflicts of interest to declare.

  • 32.
    Jakobsson Larsson, Birgitta
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Askmark, Håkan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    Nygren, Ingela
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis2014In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 21-22, p. 3148-3155Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To prospectively identify different coping strategies among newly diagnosed amyotrophic lateral sclerosis patients and whether they change over time and to determine whether physical function, psychological well-being, age and gender correlated with the use of different coping strategies.

    BACKGROUND: Amyotrophic lateral sclerosis is a fatal disease with impact on both physical function and psychological well-being. Different coping strategies are used to manage symptoms and disease progression, but knowledge about coping in newly diagnosed amyotrophic lateral sclerosis patients is scarce.

    DESIGN: This was a prospective study with a longitudinal and descriptive design.

    METHODS: A total of 33 patients were included and evaluation was made at two time points, one to three months and six months after diagnosis. Patients were asked to complete the Motor Neuron Disease Coping Scale and the Hospital Anxiety and Depression Scale. Physical function was estimated using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale.

    RESULTS: The most commonly used strategies were support and independence. Avoidance/venting and information seeking were seldom used at both time points. The use of information seeking decreased between the two time points. Men did not differ from women, but patients ≤64 years used positive action more often than older patients. Amyotrophic Lateral Sclerosis Functional Rating Scale was positively correlated with positive action at time point 1, but not at time point 2. Patients' psychological well-being was correlated with the use of different coping strategies.

    CONCLUSIONS: Support and independence were the most used coping strategies, and the use of different strategies changed over time. Psychological well-being was correlated with different coping strategies in newly diagnosed amyotrophic lateral sclerosis patients.

    RELEVANCE TO CLINICAL PRACTICE: The knowledge about coping strategies in early stage of the disease may help the nurses to improve and develop the care and support for these patients.

  • 33.
    Jakobsson Larsson, Birgitta
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nygren, Ingela
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression2016In: Journal of the Neurological Sciences, ISSN 0022-510X, E-ISSN 1878-5883, Vol. 361, p. 235-242Article in journal (Refereed)
    Abstract [en]

    To evaluate coping strategies among patients with Amyotrophic lateral sclerosis starting with diagnosis and during the disease progression, as well as investigate changes and correlations between coping strategies, emotional well-being and physical function. A total of 36 patients participated in the study. The patients filled out the Hospital Anxiety and Depression Scale and the Motor Neuron Disease Coping Scale. Physical function was measured using the revised ALS functional rating scale. Data were collected regularly from diagnosis and over a two years period. As a way to cope with the disease patients relied on both problem focused and emotional focused strategies. The use of coping strategies remained stable. Both physical disabilities and emotional well-being was related to some coping strategies, with some variation during the disease progression. Moreover, some coping strategies were related to symptoms of anxiety and depression. Irrespective of whether the coping strategies affect the emotional well-being or vice versa, the results show the importance of early and continuous evaluation of coping and emotional well-being to ease the emotional distress and provide support to the patient so that he/she can cope with the disease during the disease progression.

  • 34.
    Jakobsson Larsson, Birgitta
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    Ozanne, A G
    Neurology, Clinical Neuroscience, Sahlgrenska Universitetssjukhus, Göteborg, Sweden.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nygren, Ingela
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    A prospective study of quality of life in amyotrophic lateral sclerosis patients2017In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 136, no 6, p. 631-638Article in journal (Refereed)
    Abstract [en]

    OBJECTS: The aim of this prospective and longitudinal study was to describe individual quality of life in patients with amyotrophic lateral sclerosis (ALS) and its correlations with physical function and emotional well-being from diagnosis and over time.

    MATERIALS AND METHODS: Thirty-six patients were included in the study. Individual quality of life was measured with the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), illness severity was assessed using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R), and emotional distress was measured using the Hospital Anxiety and Depression Scale (HADS). Data were collected from diagnosis and thereafter, every six months for a period of two years. Twelve patients completed the 24-month follow-up.

    RESULTS: Family, friends and own physical health were important for overall quality of life, from diagnosis and during the disease progression. Most patients had good quality of life, which remained stable, despite changed physical functions. Several patients scored above the cut-off score for doubtful and clinical anxiety and depression early on after diagnosis, and there was a significant decrease in anxiety over time. Soon after diagnosis, there was a correlation between depression and quality of life.

    CONCLUSION: The family, social relations and own physical health are important for overall quality of life in patients with ALS. Thus, supporting the family and facilitating so that patients can continue to stay in contact with friends are important aspects during the disease. Conducting an early screening for depression can be important for preventing decreased quality of life.

  • 35.
    Larsson, Birgitta Jakobsson
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    Fröjd, Camilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Education in Nursing.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nygren, Ingela
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
    Relatives of patients with amyotrophic lateral sclerosis: Their experience of care and support2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1569-1577Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The purpose of this study was to describe relatives' experience of patient care and the support they themselves received during the course of disease progression.

    METHOD: A total of 15 relatives were included from two neurology clinics in Sweden: 7 wives, 4 husbands, and 4 daughters. Data were collected through qualitative interviews 6 to 12 months after the patient had died. Content analysis was performed to analyze the interviews.

    RESULT: The results showed that patient care was experienced as positive and as being based on the patient's needs and desires. Treatment from the staff, support and help, knowledge, availability, and continuity among the team were important reasons for the relations to feel secure. In addition, support for relatives was available, but different factors influenced its use. Most relatives did not think about their own needs but focused on the patient.

    SIGNIFICANCE OF RESULTS: It is important that care and support for both patients and relatives be based on individual needs. The staff members responsible for providing this care and support must have knowledge and experience of the disease and its specific care. If they do not belong to an ALS (amyotrophic lateral sclerosis) team, they may require further education and support. The relatives focus on the patient's situation and do not think of their own needs. It is therefore important that health professionals be observant of the relatives and offer them help and support to better manage their situation.

  • 36.
    Larsson, Kjerstin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine. Section for Social Work, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden..
    Lööf, Lars
    Drug and Therapeutics committee, Västerås, Sweden..
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Stress, coping and support needs of patientes with ulcerative colitis and Crohn's disease: a qualitative descriptive study2017In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 26, no 5-6, p. 648-657Article in journal (Refereed)
    Abstract [en]

    Aims and objectives

    To examine disease‐related stress, coping strategies and the need for information and support in patients with inflammatory bowel disease (ulcerative colitis or Crohn's disease).

    Background

    Psychological stress is an important factor in ulcerative colitis and Crohn's disease, and therefore, coping strategies and support needs should be considered in routine clinical practice.

    Design

    This is a qualitative study using a descriptive interview‐based approach.

    Method

    Fifteen patients with ulcerative colitis (n = 7) or Crohn's disease (n = 8) were interviewed. The interviews were analysed with content analysis.

    Results

    The informants largely focused on disease‐related stress (e.g. access to a toilet, symptoms and worries) and relations to other people (various reactions from others and social situations). Behavioural strategies (i.e. taking actions and the need for making plans, prepare and adapt), social strategies (seeking help and information and sharing feelings about the disease with others) and emotional strategies (distraction, positive attitude and acceptance) were adopted to cope with the stress associated with the disease. The need for information and support concerned instrumental support (disease‐related information) and emotional support (to talk about disease management).

    Conclusion

    Faecal urgency and the fear of losing bowel control are important stressors for patients with inflammatory bowel disease. The patients handle this problem using various coping strategies depending on the type of stressful events. Both instrumental and emotional support were requested which primarily occurred at the time of diagnosis and disease flare‐ups.

    Relevance to clinical practice

    Patients with ulcerative colitis or Crohn's disease ask for information and psychosocial support that are tailored to their individual needs and at different stages in the disease trajectory to improve everyday life and strengthen self‐management strategies.

  • 37.
    Lundh, Marie Høyer
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Lampic, Claudia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ahlgren, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg. Department of Oncology, Gävle Hospital, Gävle, Sweden.
    Bergkvist, Leif
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland.
    Lambe, Mats
    Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden.
    Berglund, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Sickness absence and disability pension following breast cancer: A population-based matched cohort study2014In: Breast, ISSN 0960-9776, E-ISSN 1532-3080, Vol. 23, no 6, p. 844-851Article in journal (Refereed)
    Abstract [en]

    Purpose: To compare sickness absence and disability pension in a population-based cohort of women with breast cancer (n = 463) from 1 year pre-diagnosis until 3 years post-diagnosis with a matched control group (n = 2310), and to investigate predictors of sickness absence during the 2nd and 3rd year post-diagnosis.

    Results: Following breast cancer, the proportion of disease-free women with sickness absence decreased post-diagnosis (1st - 3rd year; 78%-31%-19%), but did not reach the pre-diagnostic level (14%; P < 0.05). Post-diagnosis, patients were more likely than controls to be sickness absent (1st - 3rd year; P < 0.001). No between-group differences were observed for disability pension post-diagnosis (P > 0.05). Among patients, chemotherapy, baseline fatigue and pre-diagnosis sick days predicted sickness absence during the 2nd, 3rd, and 2nd and 3rd year post-diagnosis, respectively (P < 0.05).

    Conclusions: Breast cancer is associated with increased sickness absence 3 years post-diagnosis. In a clinical setting, prevention and treatment of side effects are important in reducing long-term consequences.

  • 38.
    Mattsson, Susanne
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Olsson, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Alfonsson, Sven
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Measuring Use of Health-Related Support on the Internet: Development of the Health Online Support Questionnaire (HOSQ)2015In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 17, no 11, article id e266Article in journal (Refereed)
    Abstract [en]

    Background: Social support plays an important role for the perceived health in people with health problems and chronic diseases.Provision of different kinds of support during the disease trajectory is crucial for many people. Online support is ubiquitous andrepresents a promising modality for people with chronic diseases. There are no existing instruments that measure various aspectsof online support.Objective: The objective of this study was to create a generic questionnaire regarding health-related support online that can beapplied to people with various health problems and illnesses. Additionally, we wanted to test the questionnaire in a cancerpopulation to assess its adequacy in the context of severe disease.Methods: Initial items for the Health Online Support Questionnaire (HOSQ) were inspired by sociologist James House regardingsocial support. An exploratory factor analysis was conducted in healthy persons or with minor health problems (n=243) on 31initial items. The scale was reduced to 18 items and the internal consistency and reliability of the scale was examined along withcontent validity. Further validation was conducted by a confirmatory analysis on the 18-item scale in a cancer population (n=215).In addition, data on demographics, health problems experienced, and Internet use were collected.Results: The exploratory factor analysis on the final 18-item scale resulted in 2 factors. After scrutinizing the content, thesefactors were labeled “reading” and “interacting” and they demonstrated good internal consistency (Cronbach alphas .88 and .77,respectively). The factors were confirmed in the cancer population. The response pattern revealed expected differences bothbetween the interaction and reading scales and according to age, gender, education, and health problems thereby supporting thevalidity of the HOSQ.Conclusions: The HOSQ may be a reliable and valid instrument for measuring the use of online support for people with healthproblems, but the results ought to be replicated in more studies to confirm the results for different diagnoses. If the results of thisstudy are corroborated by future studies, the HOSQ may be used as a basis for the development of different forms of support onthe Internet.

  • 39.
    Mattsson, Susanne
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Olsson, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Health-Related Internet Use in People With Cancer: Results From a Cross-Sectional Study in Two Outpatient Clinics in Sweden2017In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 19, no 5, article id e163Article in journal (Refereed)
  • 40.
    Mattsson, Susanne
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Olsson, Erik Martin Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta Beda Kristina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Identification of Anxiety and Depression Symptoms in Patients With Cancer: Comparison Between Short and Long Web-Based Questionnaires2019In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 21, no 4, article id e11387Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Physicians and nurses in cancer care easily fail to detect symptoms of psychological distress because of barriers such as lack of time, training on screening methods, and knowledge about how to diagnose anxiety and depression. National guidelines in several countries recommend routine screening for emotional distress in patients with cancer, but in many clinics, this is not implemented. By inventing screening methods that are time-efficient, such as digitalized and automatized screenings with short instruments, we can alleviate the burden on patients and staff.

    OBJECTIVE: The aim of this study was to compare Web-based versions of the ultrashort electronic Visual Analogue Scale (eVAS) anxiety and eVAS depression and the short Hospital Anxiety and Depression Scale (HADS) with Web-based versions of the longer Montgomery Åsberg Depression Rating Scale-Self-report (MADRS-S) and the State Trait Anxiety Inventory- State (STAI-S) with regard to their ability to identify symptoms of anxiety and depression in patients with cancer.

    METHODS: Data were obtained from a consecutive sample of patients with newly diagnosed (<6 months) breast, prostate, or colorectal cancer or with recurrence of colorectal cancer (N=558). The patients were recruited at 4 hospitals in Sweden between April 2013 and September 2015, as part of an intervention study administered via the internet. All questionnaires were completed on the Web at the baseline assessment in the intervention study.

    RESULTS: The ultrashort and short Web-based-delivered eVAS anxiety, eVAS depression and HADS were found to have an excellent ability to discriminate between persons with and without clinical levels of symptoms of anxiety and depression compared with recommended cutoffs of the longer instruments MADRS-S and STAI-S (area under the curve: 0.88-0.94). Cutoffs of >6 on HADS anxiety and >7 hundredths (hs) on eVAS anxiety identified patients with anxiety symptoms with high accuracy. For HADS depression, at a cutoff of >5 and eVAS depression at a cutoff of >7 hs, the accuracy was very high likewise.

    CONCLUSIONS: The use of the short and ultrashort tools, eVAS and HADS, may be a suitable initial method of Web-based screening in busy clinical settings. However, there are still a proportion of patients who lack access to the internet or the ability to use it. There is a need to find solutions for this group to find all the patients with psychological distress.

  • 41.
    Mazzoni, Anne-Sophie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Department of Public Health, Sport and Nutrition, Faculty of Healthand Sport Sciences, University of Agder, Kristiansand, Norway.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Department of Public Health, Sport and Nutrition, Faculty of Healthand Sport Sciences, University of Agder, Kristiansand, Norway.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    "Finding my own motivation" - A Mixed Methods Study of Exercise and Behaviour Change Support During Oncological Treatment2019In: International Journal of Behavioral Medicine, ISSN 1070-5503, E-ISSN 1532-7558Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Exercising during oncological treatment is beneficial but challenging for persons with cancer and may require strategies to increase motivation. Behaviour change support, including specific behaviour change techniques (BCTs), have been used to facilitate exercise in persons undergoing oncological treatment, but more detailed knowledge from an individual perspective is needed to inform clinical practice. The aims were to explore the motivational experiences of exercise combined with behaviour change support, and to describe how specific BCTs were valued among persons exercising during oncological treatment. METHODS: A mixed-methods study was conducted using semi-structured interviews (n = 18) and a questionnaire (n = 229). Participants with breast, colorectal or prostate cancer who completed or dropped out of a six-month exercise programme during oncological treatment were included. The interviews were analysed with thematic analysis and the questionnaire with descriptive statistics (median and interquartile range). RESULTS: The participants underwent a motivational process through the exercise programme. By experiencing 'Health gains and mastery', 'Learning', 'Affinity', 'Commitment', and 'Managing challenges', they found incentives that fostered feelings of autonomy, competence and relatedness, leading to an increased motivation to exercise. Social support from coaches, structuring the physical environment with scheduled sessions, self-monitoring with resistance training log, and feedback based on heart rate monitor and fitness tests were the most valued BCTs. CONCLUSIONS: The results indicate the importance of finding incentives and creating an environment that fosters autonomy, competence and relatedness to motivate persons to exercise during oncological treatment. Some BCTs appear particularly useful and may be used by health professionals to increase patients' motivation to exercise.

  • 42.
    Mazzoni, Anne-Sophie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Agder, Fac Hlth & Sport Sci, Dept Publ Hlth Sport & Nutr, Box 422, NO-4604 Kristiansand, Norway..
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Agder, Fac Hlth & Sport Sci, Dept Publ Hlth Sport & Nutr, Box 422, NO-4604 Kristiansand, Norway..
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Comparison between logbook-reported and objectively-assessed physical activity and sedentary time in breast cancer patients: an agreement study2017In: BMC sports science, medicine and rehabilitation, ISSN 2052-1847, Vol. 9, article id 8Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Increasing physical activity (PA) and decreasing sedentary time (ST) have important health effects among breast cancer patients, a growing population group. PA and sedentary behaviors are complex multi-dimensional behaviors and are challenging to monitor accurately. To date few studies have compared self-reports and objective measurement in assessing PA and ST in women undergoing breast cancer treatments. The aim of the present study was to compare self-reports and objective measures for assessing daily time spent in moderate-intensity physical activity (MPA), vigorous-intensity physical activity (VPA) and ST in women undergoing breast cancer treatments.

    METHODS: Baseline data from 65 women with breast cancer scheduled to undergo adjuvant treatment was included. Daily time spent in MPA, VPA and ST was assessed by a study-specific logbook and the SenseWear Armband mini (SWA). The level of agreement between the two measurement methods was then determined by performing Bland-Altman plots with limits of agreements, and calculating Spearman's rank correlation coefficients.

    RESULTS: The mean difference between the logbook and SWA with limits of agreement was 14 (±102) minutes for MPA, 1 (±21) minute for VPA and -196 (±408) minutes for ST, respectively. The logbook reported an average of 34 and 50% higher values than the SWA for MPA and VPA, as well as an average of 27% lower values for ST (P < 0.05). The Spearman's rank correlation coefficients showed that the differences between the methods increased as the average amount of time spent in PA and ST increased (P < 0.01).

    CONCLUSIONS: The results imply that the two measurement methods have limited agreement and cannot be used interchangeably.

  • 43.
    Meyer, Anna C.
    et al.
    Karolinska Inst, Inst Environm Med, Epidemiol Unit, POB 210, SE-17177 Stockholm, Sweden.
    Brooke, Hannah L.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Karolinska Inst, Inst Environm Med, Epidemiol Unit, POB 210, SE-17177 Stockholm, Sweden.
    Modig, Karin
    Karolinska Inst, Inst Environm Med, Epidemiol Unit, POB 210, SE-17177 Stockholm, Sweden.
    The role of children and their socioeconomic resources for the risk of hospitalisation and mortality - a nationwide register-based study of the total Swedish population over the age 702019In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 19, article id 114Article in journal (Refereed)
    Abstract [en]

    Background: Previous studies have shown that mortality in old age is associated with both number of children and their socioeconomic resources. The underlying mechanisms are unclear, as well as when during the process of health deterioration the advantage of parents over non-parents arises. This study aims to examine how the number of children and their socioeconomic resources are associated with different health outcomes among their parents, namely the hazard for i) first hospitalisation, ii) re-admission, iii) mortality after first hospitalisation, and iv) overall mortality.

    Method: This longitudinal cohort study includes all individuals born 1920-1940 who were living in Sweden at age 70years (890,544 individuals). Individuals were linked to their offspring and spouse using administrative registers and followed for up to 25years. Associations were estimated using multivariable Cox models adjusted for index persons' education and income, marital status, their partners' education, and age at first birth.

    Results: In this study, having children was associated with reduced mortality risk of their parents, but not with the risk of being hospitalised, which increased as number of children increased. A higher education of children was protective for all parental outcomes independent of number of children and their financial resources. In fact, income of the children was only weakly associated with the health of their parents.

    Conclusions: The benefit of having children compared to childlessness for health in old age seems to arise once individuals have become ill rather than before. Children's education is important for parental health and mortality, in fact more important than the number of children itself in this Swedish cohort.

  • 44.
    Nordin, Karin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science.
    Physical Training and Cancer (Phys-Can) - Design and Description of a Multicenter Clinical Trial Within a Multidisciplinary Consortium2014Conference paper (Other academic)
  • 45.
    Paneque, Milena
    et al.
    Univ Porto, i3S, Oporto, Portugal.;Univ Porto, IBMC, Oporto, Portugal.;Univ Porto, CGPP, Rua Julio Amaral de Carvalho 45, P-4200135 Oporto, Portugal..
    Serra-Juhe, Clara
    Univ Pompeu Fabra, Hosp Mar Res Inst IMIM, Genet Unit, Barcelona, Spain.;Inst Salud Carlos III, CIBERER, Madrid, Spain..
    Pestoff, Rebecka
    Linkoping Univ Hosp, Dept Clin Genet, Linkoping, Sweden.;Linkoping Univ, Dept Clin & Expt Med, Linkoping, Sweden..
    Cordier, Christophe
    Synlab Genet, Dept Genet, Lausanne, Switzerland..
    Silva, Joao
    Univ Porto, i3S, Oporto, Portugal.;Univ Porto, IBMC, Oporto, Portugal.;Univ Porto, CGPP, Rua Julio Amaral de Carvalho 45, P-4200135 Oporto, Portugal..
    Moldovan, Ramona
    Babes Bolyai Univ, Dept Psychol, Cluj Napoca, Romania..
    Ingvoldstad, Charlotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Obstetrics and Reproductive Health Research. Karolinska Inst, Dept Clin Sci Intervent & Technol, Stockholm, Sweden..
    Complementarity between medical geneticists and genetic counsellors: its added value in genetic services in Europe2017In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 25, no 8, p. 918-923Article in journal (Refereed)
    Abstract [en]

    Clinical genetic services have progressed significantly the last few decades. This has led to the need for non-medical health-care professionals working as genetic counsellors in Europe and worldwide. However, there is no unified approach to genetic counsellors' role in health-care services in Europe, as in most countries the profession is still emerging and the educational backgrounds diverge noticeably, within and between countries. This qualitative study aims to describe the potential added value of genetic counsellors in clinical genetics teams and to explore their tasks and responsibilities in different European countries. A total of 143 participants providing genetic counselling in Europe at the time of the survey responded. The results show differences in activities of genetic counsellors, although there is a wide range of roles, which are similar. The ability to establish a quality relationship with consultands was frequently mentioned as one of the strengths of genetic counsellors, as well as a patient-centred approach. It is believed that genetic counsellors add a more holistic approach of psychosocial and familial dimensions of genetic concerns to the multidisciplinary teams. This study provides examples of successful integration of genetic counsellors in teams, as complementariness with medical geneticist became clear in several cases. Although the added value of genetic counsellors was manifested, professional recognition of genetic counsellors across Europe is still needed in order to support the quality of patients care and safety of practice.

  • 46.
    Pestoff, R.
    et al.
    Linkoping Univ Hosp, Dept Clin Genet, Linkoping, Sweden.;Linkoping Univ, Dept Clin & Expt Med, Linkoping, Sweden..
    Moldovan, R.
    Babes Bolyai Univ, Dept Psychol, Cluj Napoca, Romania..
    Cordier, C.
    Synlab Genet, Dept Genet, Lausanne, Switzerland..
    Serra-Juhe, C.
    Univ Pompeu Fabra Hosp Mar Res Inst IMIM, Genet Unit, Barcelona, Spain.;Inst Salud Carlos III, Ctr Invest Biomed Red Enfermedades Raras CIBERER, Madrid, Spain..
    Paneque, M.
    Univ Porto, I3S Inst Invest & Inovacao Saude, Porto, Portugal.;Univ Porto, Inst Mol & Cell Biol, Ctr Predict & Prevent Genet CGPP, IBMC, Porto, Portugal..
    Ingvoldstad, Charlotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Obstetrics and Reproductive Health Research. Karolinska Inst, Dept Clin Sci Intervent & Technol, Stockholm, Sweden.
    How practical experiences, educational routes and multidisciplinary teams influence genetic counselors' clinical practice in Europe2018In: Clinical Genetics, ISSN 0009-9163, E-ISSN 1399-0004, Vol. 93, no 4, p. 891-898Article in journal (Refereed)
    Abstract [en]

    The main objective of our study was to explore whether, and to what extent, genetic counselors' characteristics impact on their tasks in practice. Specifically, we explored the complementariness between genetic counselors and medical geneticists and therefore looked at the most relevant tasks of genetic counselors, according to genetic counselors themselves and according to the medical geneticists they work with. A total of 104 genetic counselors and 29 medical geneticists from 15 countries completed a purposefully designed questionnaire. Results showed that most genetic counselors in Europe perform similar tasks, irrespective of their backgrounds. When looking at the factors influencing genetic counselors' roles data showed that the type of tasks performed by genetic counselors is associated with the years of experience in the field, not with their background or education. Of particular interest was the consensus between genetic counselors and medical geneticists regarding the genetic counselor's role. Not surprisingly, tasks with more psychosocial implications were seen as genetic counselors' eligibility while tasks with more medical implications were seen as medical geneticists' attribution. Our study shows that most genetic counselors work in tune with international recommendations and seem to be supportive of multidisciplinary teams. Corroborating our data with previous research, we discuss potential implications for practice and training in genetic counseling.

  • 47.
    Rissanen, Ritva
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ahlgren, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Cognitive processing in relation to psychological distress in women with breast cancer: a theoretical approach2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 2, p. 222-228Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE:

    To evaluable a cognitive procession model developed by Creamer and colleagues, this study examined the longitudinal relationship between intrusion and psychological distress, via avoidance, in women with breast cancer.

    METHODS:

    Participants included 189 patients who were newly diagnosed with breast cancer. The longitudinal association between intrusion, avoidance and psychological distress and the mediating role of avoidance between intrusion and psychological distress were examined. Intrusion was measured at inclusion (T1), avoidance at 3 months post-inclusion (T2) and psychological distress at 12 months post-inclusion (T3).

    RESULTS:

    Results suggested that avoidance at T2 did not mediate the relationship between intrusions at T1 and psychological distress at T3.

    CONCLUSION:

    The results did not provide support for Creamer's model in an early-stage breast cancer population, which suggests that early-stage breast cancer patient's process trauma differently from late-stage cancer patients. Therefore, it might be suggested that early-stage and late-stage cancer patients require different types of support and treatment for the distress experienced.

  • 48.
    Rissanen, Ritva
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ahlgren, Johan
    Department of Oncology, University Hospital of Örebro, Sweden.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    A stepped care stress management intervention on cancer-related traumatic stress symptoms among breast cancer patients: A randomized study in group vs. individual setting2015In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, no 9, p. 1028-1035Article in journal (Refereed)
    Abstract [en]

    Objective

    To evaluate the mode of delivery of a stress management intervention, in a group or individual setting, on self-reported cancer-related traumatic stress symptoms. A secondary aim was to evaluate a stepped care approach.

    Methods

    All study participants (n  = 425), who were female, newly diagnosed with breast cancer and receiving standard oncological care were offered Step I of the stepped care approach, a stress management education (SME). Thereafter, they were screened for cancer-related traumatic stress symptoms, and, if present (n = 304), were invited to join Step II, a more intense intervention, derived from cognitive behavioral therapy, to which they were randomized to either a group (n = 77) or individual (n  = 78) setting. To assess cancer-related traumatic stress symptoms, participants completed the Impact of Event Scale and the Hospital Anxiety and Depression Scale at the time of inclusion, three-months post-inclusion and approximately 12-months post-inclusion.

    Results

    The SME did not significantly decrease any of the cancer-related traumatic stress symptoms. No statistically significant differences were found between the group and the individual setting interventions. However, only 54% of the participants attended the group setting compared to 91% for the individual setting.

    Conclusion

    The mode of delivery had no effect on the cancer-related traumatic stress symptoms; however, the individual setting was preferred. In future studies, a preference-based RCT design will be recommended for evaluating the different treatment effects.

  • 49.
    Roshanai, Afsaneh Hayat
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Ingvoldstad, Charlotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Lindgren, Peter
    Fetal ultrasound examination and assessment of genetic soft markers in Sweden: are ethical principles respected?2015In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 94, no 2, p. 141-147Article in journal (Refereed)
    Abstract [en]

    ObjectiveTo explore procedures for providing information, assessment and documentation about ultrasound soft markers in Sweden. DesignDescriptive, quantitative, cross-sectional survey. SampleEighty-two percent of all obstetric ultrasound clinics in Sweden (covering >90% of routine fetal ultrasound examinations). MethodsPostal questionnaire survey between December 2010 and January 2011. Main outcome measuresItems about provision of information, risk estimation, and follow-up strategies in relation to observed ultrasound soft markers. ResultsMore than 96% of all fetal routine ultrasound examinations were performed at 15-21 gestational weeks, primarily by midwives. Half of the clinics replying wanted prospective parents to be provided with information, but 38 (78%) of the clinics did not routinely inform about assessment of soft markers before the examination. Follow up and decisions on whether to give information when soft markers were found were based on the number and type of the observed markers, whether other structural deviations existed, and on the woman's age and anxiety level. Only at eight clinics (17%) were parents informed about all soft marker findings. At 13 clinics (28%) observed markers were documented/recorded, even though the women were not informed. ConclusionsInformation regarding the assessment and importance of observed soft markers seems to be inconsistent and insufficient. Provision of information and documentation of findings appear to be handled differently at obstetric ultrasound clinics. This suggests that Swedish ethical principles relating to healthcare and ultrasound examinations are incompletely followed and national guidelines appear to be necessary.

  • 50.
    Roshanai, Afsaneh Hayat
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Lindgren, Peter
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ingvoldstad, Charlotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Swedish University Students' Opinion Regarding Information About Soft Markers2016In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599, Vol. 25, no 1, p. 146-156Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate the opinions of Swedish university students about information regarding soft markers, when observed at second trimester ultrasound screening. A cross-sectional survey, where 85 Swedish university students completed a study specific questionnaire containing eleven hypothetical scenarios, involving various parameters (disease/syndromes/malformations with different characteristics), and location of the markers. Almost all participants indicated that they would wish to be informed, prior to the ultrasound examination, about the assessment and significance of soft markers. However, the number of respondents who requested information about a potential actual finding was considerably less. Several participants wanted to be informed about detected markers associated to serious conditions but not when the marker indicated an increased risk for a treatable disease. Also, the specific location of the marker was of importance to the participants. The majority of respondents wished to be informed about the soft markers if they were observed in the heart or the brain of the foetus, compared to if they were located in the intestine or the skeleton. The students' opinion, in this study, implicate the importance of pre-examination information to enable expectant parents to make informed choice regarding the second trimester ultrasound screening as well as on reciving information of actual findings.

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