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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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa. 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 Profession2019Ingår i: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, nr 2, s. 183-197Artikel, forskningsöversikt (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Sandberg, Sverre
    Illness Perception and Psychological Distress in Persons with Porphyria Cutanea Tarda2016Ingår i: Acta Dermato-Venereologica, ISSN 0001-5555, E-ISSN 1651-2057, Vol. 96, nr 5, s. 674-678Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kirurgiska vetenskaper, Radiologi.
    Röing, Marta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Hälso- och sjukvårdsforskning.
    Ehrsson, Ylva Tiblom
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kirurgiska vetenskaper, Öron-, näs- och halssjukdomar.
    Johansson, Birgitta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    It's a question of endurance: patients with head and neck cancer experiences of 18F-FDG PET/CT in a fixation mask2017Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 29, s. 85-90, artikel-id S1462-3889(17)30082-0Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Assmus, Jörg
    Thormodsen, Inger
    Berntsen, Sveinung
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Early rehabilitation of cancer patients: An individual randomized stepped-care stress-management intervention.2019Ingår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 28, nr 2, s. 301-308Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Rissanen, Ritva
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Ahlgren, Johan
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    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 Setting2014Ingår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, nr Suppl. 3, s. 171-171, artikel-id P1-0300Artikel i tidskrift (Övrigt vetenskapligt)
  • 6.
    Bean, Christopher
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap.
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    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 study2019Konferensbidrag (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap.
    Virtanen, Pekka
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap.
    Virtanen, Marianna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap.
    Berg, Noora
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Hallqvist, Johan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Preventionsmedicin. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Allmänmedicin och preventivmedicin.
    Hammarström, Anne
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap.
    Youth participation in Active Labour Market Programs (ALMPs) during boom/recession and mental health: a 20-year follow-up2019Konferensbidrag (Refereegranskat)
  • 8.
    Berg, Noora J.
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. 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 midlife2019Ingår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 47, nr 4, s. 420-427Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Virtanen, Marianna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap. University of Eastern Finland.
    Lintonen, Tomi
    Tampere University.
    Hammarström, Anne
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Folkhälsovetenskap. Stockholm University.
    The contribution of drinking culture at comprehensive school to heavy episodic drinking from adolescence to midlife2019Ingår i: European Journal of Public Health, ISSN 1101-1262, E-ISSN 1464-360XArtikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Aaronson, Neil K
    Buffart, Laurien
    Börjeson, Sussanne
    Demmelmaier, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Hellbom, Maria
    Hojman, Pernille
    Igelström, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Johansson, Birgitta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Pingel, Ronnie
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Raastad, Truls
    Velikova, Galina
    Åsenlöf, P.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Fysioterapi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    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 outcome2017Ingår i: BMC Cancer, ISSN 1471-2407, E-ISSN 1471-2407, Vol. 17, nr 1, artikel-id 218Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Igelström, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Hetlelid, Ken J.
    Henriksson, Anna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Phys-Can Feasibility Study: Objectively Recorded Physical Activity in Cancer Patients2014Konferensbidrag (Övrigt vetenskapligt)
  • 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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Berntsen, Sveinung
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Which exercise prescriptions optimize V̇O2max during cancer treatment?: a systematic review and meta-analysis2019Ingår i: Scandinavian Journal of Medicine and Science in Sports, ISSN 0905-7188, E-ISSN 1600-0838, Vol. 29, nr 9, s. 1274-1287Artikel, forskningsöversikt (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Fjällskog, Marie-Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Onkologisk endokrinologi.
    Peterson, Magnus
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Allmänmedicin och preventivmedicin.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi.
    Nurses’ experiences of taxane-induced pain in people treated for breast cancerIngår i: Artikel i tidskrift (Övrigt vetenskapligt)
  • 14.
    Börjesson, Susanne
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning Dalarna.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Fjällskog, Marie-Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Onkologisk endokrinologi.
    Rissanen, Ritva
    Karolinska Inst, Dept Publ Hlth Sci, Stockholm, Sweden.
    Peterson, Magnus
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Allmänmedicin och preventivmedicin.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    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 experience2018Ingår i: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, s. 581-591Artikel, forskningsöversikt (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Gunningberg, Lena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Unavoidable pressure ulcers at the end of life and nurse understanding2017Ingår i: British Journal of Nursing, ISSN 0966-0461, E-ISSN 2052-2819, Vol. 26, nr 20, s. s6-s17Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. 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 Review2018Ingår i: Arthritis care & research, ISSN 2151-464X, E-ISSN 2151-4658, Vol. 70, nr 2, s. 185-196Artikel, forskningsöversikt (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Fysioterapi.
    Demmelmaier, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Bergman, Stefan
    Institutionen för medicin, avdelningen för samhällsmedicin och folkhälsa, Göteborgs universitet.
    Pettersson, Susanne
    Department of Rheumatology, Karolinska university hospital.
    Åsenlöf, Pernilla
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Fysioterapi.
    Concurrent validity and stability of subgroup assignment based on three levels of pain condition severity in patients with musculoskeletal painIngår i: Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Fysioterapi.
    Åsenlöf, Pernilla
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Fysioterapi.
    Demmelmaier, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    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 cohortIngår i: Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Nygren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för radiologi, onkologi och strålningsvetenskap, Enheten för onkologi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Kihlbom, Ulrik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials2015Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, nr 1, s. 133-141Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Kihlbom, Ulrik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Univ Bergen, Dept Global Publ Hlth & Primary Care, Bergen, Norway.
    Silen, Marit
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Nygren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials2016Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, nr 3, s. 516-523Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa. 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 aneuploidy2019Ingår i: Prenatal Diagnosis, ISSN 0197-3851, E-ISSN 1097-0223, Vol. 39, nr 8, s. 635-642Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Taxane-induced pain: Experiences of women with breast cancer and nurses providing their care2018Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    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.

    Delarbeten
    1. Women With Breast Cancer: Experience of Chemotherapy-Induced Pain: Triangulation of Methods
    Öppna denna publikation i ny flik eller fönster >>Women With Breast Cancer: Experience of Chemotherapy-Induced Pain: Triangulation of Methods
    Visa övriga...
    2015 (Engelska)Ingår i: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 38, nr 1, s. 31-39Artikel i tidskrift (Refereegranskat) 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.

    Nationell ämneskategori
    Annan medicin och hälsovetenskap Cancer och onkologi
    Identifikatorer
    urn:nbn:se:uu:diva-224617 (URN)10.1097/NCC.0000000000000124 (DOI)000346161400010 ()24457228 (PubMedID)
    Tillgänglig från: 2014-05-15 Skapad: 2014-05-14 Senast uppdaterad: 2018-10-05Bibliografiskt granskad
    2. Women Treated for Breast Cancer, Experiences of Chemotherapy-Induced Pain:: Memories, Any Present Pain and Future reflections
    Öppna denna publikation i ny flik eller fönster >>Women Treated for Breast Cancer, Experiences of Chemotherapy-Induced Pain:: Memories, Any Present Pain and Future reflections
    Visa övriga...
    2016 (Engelska)Ingår i: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 39, nr 6, s. 464-472Artikel i tidskrift (Refereegranskat) 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.

    Nationell ämneskategori
    Omvårdnad
    Identifikatorer
    urn:nbn:se:uu:diva-268691 (URN)10.1097/NCC.0000000000000322 (DOI)000387114100012 ()26632880 (PubMedID)
    Forskningsfinansiär
    Cancerfonden, 10 0001
    Tillgänglig från: 2015-12-09 Skapad: 2015-12-09 Senast uppdaterad: 2018-10-05Bibliografiskt granskad
    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
    Öppna denna publikation i ny flik eller fönster >>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
    Visa övriga...
    2018 (Engelska)Ingår i: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, s. 581-591Artikel, forskningsöversikt (Refereegranskat) 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.

    Ort, förlag, år, upplaga, sidor
    Berlin/Boston: , 2018
    Nationell ämneskategori
    Cancer och onkologi
    Forskningsämne
    Vårdvetenskap
    Identifikatorer
    urn:nbn:se:uu:diva-356212 (URN)10.1515/sjpain-2018-0050 (DOI)000451213600006 ()29949517 (PubMedID)
    Forskningsfinansiär
    Cancerfonden, 100001
    Tillgänglig från: 2018-07-23 Skapad: 2018-07-23 Senast uppdaterad: 2019-01-18Bibliografiskt granskad
    4. Nurses’ experiences of taxane-induced pain in people treated for breast cancer
    Öppna denna publikation i ny flik eller fönster >>Nurses’ experiences of taxane-induced pain in people treated for breast cancer
    Visa övriga...
    (Engelska)Ingår i: Artikel i tidskrift (Övrigt vetenskapligt) Submitted
    Nationell ämneskategori
    Omvårdnad
    Forskningsämne
    Vårdvetenskap
    Identifikatorer
    urn:nbn:se:uu:diva-362508 (URN)
    Tillgänglig från: 2018-10-05 Skapad: 2018-10-05 Senast uppdaterad: 2018-10-10
  • 23.
    Hellerstedt-Börjesson, Susanne
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Fjällskog, Marie-Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för radiologi, onkologi och strålningsvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Endokrin Onkologi.
    Holmström, Inger K
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Hälso- och sjukvårdsforskning. Malardalen Univ, Sch Hlth Care & Social Welf, Vasteras, Sweden.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Women Treated for Breast Cancer, Experiences of Chemotherapy-Induced Pain:: Memories, Any Present Pain and Future reflections2016Ingår i: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 39, nr 6, s. 464-472Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Fjällskog, Marie-Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för radiologi, onkologi och strålningsvetenskap, Enheten för onkologi.
    Holmström, Inger K
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Hälso- och sjukvårdsforskning.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Women With Breast Cancer: Experience of Chemotherapy-Induced Pain: Triangulation of Methods2015Ingår i: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 38, nr 1, s. 31-39Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Johansson, Birgitta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Igelström, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Fysioterapi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Perceived barriers to and facilitators of being physically active during adjuvant cancer treatment2016Ingår i: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 99, nr 7, s. 1220-1226Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Johansson, Birgitta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap.
    Igelström, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Phys-Can Feasibility Study: Perceived Barriers and Facilities to Exercise During Adjuvant Cancer Treatment2014Konferensbidrag (Övrigt vetenskapligt)
  • 27.
    Igelström, Helena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Berntsen, Sveinung
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Demmelmaier, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Johansson, Birgitta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Exercise during and after curative oncological treatment: a mapping review2017Ingår i: Physical Therapy Reviews, ISSN 1083-3196, E-ISSN 1743-288X, Vol. 22, nr 3/4, s. 103-115Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Berntsen, Sveinung
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Hetlelid, Ken
    Åsenlöf, Pernilla
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Fysioterapi.
    Demmelmaier, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Henriksson, Anna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Arving, Cecilia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Johansson, Birgitta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för radiologi, onkologi och strålningsvetenskap, Enheten för onkologi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Phys-Can feasibility Study: Preparing for Physical Training and Behavioral Medicine Strategies2014Konferensbidrag (Övrigt vetenskapligt)
  • 29.
    Isaksson, Stina
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Skoog Svanberg, Agneta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi.
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi.
    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?2011Ingår i: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 26, nr 4, s. 853-860Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Skoog Svanberg, Agneta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi.
    Sydsjö, Gunilla
    Linell, Lovisa
    Lampic, Claudia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    It takes two to tango: Information-sharing with offspring among heterosexual parents following identity-release sperm donation.2016Ingår i: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 31, nr 1, s. 125-132Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Sydsjö, Gunilla
    Division of Obstetrics and Gynaecology, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linkoping University.
    Skoog Svanberg, Agneta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Obstetrik & gynekologi.
    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 years2012Ingår i: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 27, nr 10, s. 2998-3007Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Askmark, Håkan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
    Nygren, Ingela
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
    Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis2014Ingår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, nr 21-22, s. 3148-3155Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nygren, Ingela
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
    Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression2016Ingår i: Journal of the Neurological Sciences, ISSN 0022-510X, E-ISSN 1878-5883, Vol. 361, s. 235-242Artikel i tidskrift (Refereegranskat)
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
    Ozanne, A G
    Neurology, Clinical Neuroscience, Sahlgrenska Universitetssjukhus, Göteborg, Sweden.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Nygren, Ingela
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
    A prospective study of quality of life in amyotrophic lateral sclerosis patients2017Ingår i: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 136, nr 6, s. 631-638Artikel i tidskrift (Refereegranskat)
    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 Individu