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  • 1. Abrahams, Harriët J. G.
    et al.
    Knoop, Hans
    Schreurs, Maartje
    Aaronson, Neil K.
    Jacobsen, Paul B.
    Newton, Robert U.
    Courneya, Kerry S.
    Aitken, Joanne F.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Brandberg, Yvonne
    Chambers, Suzanne K.
    Gielissen, Marieke F. M.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Goedendorp, Martine M.
    Graves, Kristi D.
    Heiney, Sue P.
    Horne, Rob
    Hunter, Myra S.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Northouse, Laurel L.
    Oldenburg, Hester S. A.
    Prins, Judith B.
    Savard, Josée
    van Beurden, Marc
    van den Berg, Sanne W.
    Verdonck-de Leeuw, Irma M.
    Buffart, Laurien M.
    Moderators of the effect of psychosocial interventions on fatigue in women with breast cancer and men with prostate cancer: Individual patient data meta-analyses2020In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 29, no 11, p. 1772-1785Article, review/survey (Refereed)
    Abstract [en]

    Objective

    Psychosocial interventions can reduce cancer‐related fatigue effectively. However, it is still unclear if intervention effects differ across subgroups of patients. These meta‐analyses aimed at evaluating moderator effects of (a) sociodemographic characteristics, (b) clinical characteristics, (c) baseline levels of fatigue and other symptoms, and (d) intervention‐related characteristics on the effect of psychosocial interventions on cancer‐related fatigue in patients with non‐metastatic breast and prostate cancer.

    Methods

    Data were retrieved from the Predicting OptimaL cAncer RehabIlitation and Supportive care (POLARIS) consortium. Potential moderators were studied with meta‐analyses of pooled individual patient data from 14 randomized controlled trials through linear mixed‐effects models with interaction tests. The analyses were conducted separately in patients with breast (n = 1091) and prostate cancer (n = 1008).

    Results

    Statistically significant, small overall effects of psychosocial interventions on fatigue were found (breast cancer: β = −0.19 [95% confidence interval (95%CI) = −0.30; −0.08]; prostate cancer: β = −0.11 [95%CI = −0.21; −0.00]). In both patient groups, intervention effects did not differ significantly by sociodemographic or clinical characteristics, nor by baseline levels of fatigue or pain. For intervention‐related moderators (only tested among women with breast cancer), statistically significant larger effects were found for cognitive behavioral therapy as intervention strategy (β = −0.27 [95%CI = −0.40; −0.15]), fatigue‐specific interventions (β = −0.48 [95%CI = −0.79; −0.18]), and interventions that only targeted patients with clinically relevant fatigue (β = −0.85 [95%CI = −1.40; −0.30]).

    Conclusions

    Our findings did not provide evidence that any selected demographic or clinical characteristic, or baseline levels of fatigue or pain, moderated effects of psychosocial interventions on fatigue. A specific focus on decreasing fatigue seems beneficial for patients with breast cancer with clinically relevant fatigue.

  • 2.
    Ahmad, Awais
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Ehrsson, Ylva Tiblom
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Langegård, Ulrica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Designing for Human Well-Being: A Case Study with Informal Caregivers of Individuals with Cancer2022In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 294, p. 214-218Article in journal (Refereed)
    Abstract [en]

    Informal Caregivers such as a spouse, other close relatives or friends of cancer patients can play an essential role in home-based treatment and care. However, the informal caregivers might not be prepared for this responsibility, and they might have several unmet requirements for taking care of patients in the home environment. The informal caregivers’ physical, social and psychological health is also profoundly affected due to the health conditions of their relatives. We propose a User-centred Positive Design as a hybrid framework by merging the traditional User-cantered design and positive design frameworks to enhance the informal caregivers’ subjective well-being. Our ongoing project (Carer-eSupport) will be used as a case study, and its main objective is to co-create and evaluate a web-based support system for informal caregivers of people with cancer. The proposed framework can be used for the design and development of health information systems with a special focus on users’ wellbeing and positive emotions.

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  • 3.
    Ahmad, Awais
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.
    Premanandan, Shweta
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media.
    Langegård, Ulrica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Cancer precision medicine.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Cancer precision medicine. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Carlsson, Maria E.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Ehrsson, Ylva Tiblom
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Positive Design Framework for Carer-eSupport: A Qualitative Study to Support Informal Caregivers of Patients with Head and Neck Cancer in Sweden2023In: JMIR Cancer, E-ISSN 2369-1999, Vol. 9, article id e45748Article in journal (Refereed)
    Abstract [en]

    Background: Informal caregivers of patients with head and neck cancer (HNC), such as the patient’s spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment.

    Objective: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. Methods: Focus groups were conducted with 15 informal caregivers and 13 healthcare professionals. Both informal caregivers and healthcare professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data.

    Results: We investigated informal caregivers’ needs, critical factors for adoption, and desired functionalities of Carer eSupport.A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches.

    Conclusions: This study provided an in-depth understanding of informal caregivers’ contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers’ well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful health interventions with a clear focus on users’ well-being and positive emotions, especially for informal caregivers of patients with HNC.

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  • 4.
    Alfonsson, Sven
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Olsson, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Hursti, Timo
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Høyer Lundh, Marie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Department of Nursing, Metropolitan University College, 2200 Copenhagen N, Denmark.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Socio-demographic and clinical variables associated with psychological distress one and three years after a breast cancer diagnosis2016In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 9, p. 4017-4023Article in journal (Refereed)
    Abstract [en]

    PURPOSE: A large group of women (20-30%) report psychological distress shortly after breast cancer diagnosis, and some experience continued or increased symptoms over time. The aim of this study was to investigate socio-demographic and clinical variables associated with sustained psychological distress in this patient group. METHODS: Women with breast cancer (n=833) completed self-report questionnaires regarding socio-demographic and clinical variables shortly after (T1) and 3years after diagnosis (T2) while data on illness severity were collected from a quality register. The Hospital Anxiety and Depression Scale was used as a measure of psychological distress at both time points. RESULTS: The number of participants who reported elevated levels of anxiety was 231 (28%) at T1 and 231 (28%) at T2 while elevated depressive symptoms was reported by 119 (14%) women at T1 and 92 (11%) at T2. Despite non-significant differences in mean scores over time, 91 (15%) participants reported increased anxiety symptoms and 47 (7%) reported increased depressive symptoms. Poor financial situation, lack of social support, previous psychiatric treatment, and high levels of fatigue were associated with both anxiety and depressive symptoms. Reporting high levels of fatigue was the variable most strongly associated with increased psychological distress over time. CONCLUSION: Most participants reported decreased psychological distress over time, but there were subgroups of women who experienced sustained or increased symptoms of anxiety or depression. Participants with poor financial status, previous psychological problems, or high levels of fatigue may be at increased risk of psychological distress. Such individuals may benefit most from psychosocial interventions.

  • 5.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala Univ, Oncol, Uppsala, Sweden..
    Patient experience of 18F-FDG-PET/CT in a mask fixation2016In: European Journal of Nuclear Medicine and Molecular Imaging, ISSN 1619-7070, E-ISSN 1619-7089, Vol. 43, p. S666-S666Article in journal (Refereed)
  • 6.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Wassberg, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Johansson, Silvia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Ahlström, Håkan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Wikehult, Björn
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences.
    Patient Experience of an 18F-FDG-PET/CT Examination:: Need for Improvements in Patient Care2015In: Journal of Radiology Nursing, ISSN 1546-0843, Vol. 34, no 2, p. 100-108Article in journal (Refereed)
    Abstract [en]

    The aims of this study were to investigate the patients' knowledge about and experience of an 18F-fluoro-deoxy-glucose (FDG)-positron emission tomography (PET)/computed tomography (CT) examination and to investigate the self-reported feelings of stress, level of physical activity, and health-related quality of life (HRQoL) and to find out if this was related to how they experienced the examination. A cross-sectional survey was used to collect information on 198 patients with known or suspected malignancy. As many as 32% to 63% were satisfied with the nursing staff, the communication, and the professional skills. Most patients did not know beforehand what an FDG-PET/CT examination was. The HRQoL, level of perceived stress, and physical activity were relatively low. A better HRQoL, lower level of perceived stress, and a higher level of physical activity were correlated to a more positive experience and higher education to more knowledge about the examination (p < .01–.05). The information before the examination needs to be improved. The results may be used to improve patient care and optimize imaging procedures.

  • 7.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Wassberg, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Johansson, Silvia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Sundin, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Ahlström, Håkan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Assessment of Whether Patients' Knowledge, Satisfaction, and Experience Regarding Their 18F-Fluoride PET/CT Examination Affects Image Quality2016In: Journal of Nuclear Medicine Technology, ISSN 0091-4916, E-ISSN 1535-5675, Vol. 44, no 1, p. 21-25Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate patients’ previous knowledge, satisfaction and experience regarding a (18F)-fluoride positron emission tomography / computed tomography examination ((18F)-fluoride PET/CT) and to explore whether experienced discomfort during the examination or pain was associated with reduced image quality. A further aim was to explore whether patients’ health-related quality of life (HRQoL) was associated with their satisfaction and experiences of the examination.

    Methods: Fifty consecutive patients with a histopathological diagnosis of prostate cancer who were scheduled for (18F)-fluoride PET/CT were asked to participate in the study, which was performed between November 2011 and April 2013. A questionnaire was used to collect information regarding the patients’ previous knowledge and experience of the examination. Image quality assessment was performed according to an arbitrary scale. The EORTC-QLQ-C30 and QLQ-PR25 were used to assess HRQoL.

    Results: Forty-six patients (96%) completed the questionnaires. Twenty-six per cent of participants did not know at all what a (18F)-fluoride PET/CT examination was. The majority (52-70%) were to a very high degree satisfied with the care provided by the nursing staff but less satisfied with the information given prior to the examination. The image quality was similar in patients who were exhausted or claustrophobic during the examination and those who were not. No correlations between HRQoL and the participants’ experience of (18F)-fluoride PET/CT were found.

    Conclusion: The majority of participants were satisfied with the care provided by the nursing staff, but there is still room for improvement especially regarding the information prior to the examination. Long examination time may be strenuous, for the patient but there was no difference in image quality between patients who felt discomfort during the examination or pain and those who did not.

  • 8.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Röing, Marta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Ehrsson, Ylva Tiblom
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    It's a question of endurance: patients with head and neck cancer experiences of 18F-FDG PET/CT in a fixation mask2017In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 29, p. 85-90, article id S1462-3889(17)30082-0Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 9.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Trampal Pulido, Carlos
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Ahlström, Håkan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Effects of web-based information on patient satisfaction and image quality in patients undergoing an 18F-FDG PET/CT examination: a randomized controlled trial2018In: European Journal of Nuclear Medicine and Molecular Imaging, ISSN 1619-7070, E-ISSN 1619-7089, Vol. 45, no Suppl 1, p. S783-S784Article in journal (Other academic)
  • 10.
    Andersson, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Trampal Pulido, Carlos
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences.
    Ahlström, Håkan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Randomized Controlled Trial Examining Effects of Web-Based Information on Patient Satisfaction and Image Quality in 18F-FDG PET/CT Examinations2019In: Journal of Nuclear Medicine Technology, ISSN 0091-4916, E-ISSN 1535-5675, no 1, p. 36-46Article in journal (Refereed)
    Abstract [en]

    Our aim was to compare the effect that having access, versus not having access, to web-based patient information on 18F-FDG PET/CT has on image quality and on patient satisfaction with their care during and knowledge about the examination, as well as to explore whether patients utilized and were satisfied with the web-based information.

    Methods: We recruited 148 patients between October 2015 and December 2016 and randomly assigned them to a standard-care group or an intervention group. Both groups received standard information about the 18F-FDG PET/CT examination, but the intervention group also received access to web-based information. A questionnaire was used to evaluate patient satisfaction with, knowledge about, and discomfort during the examination, and a masked assessment of image quality was conducted.

    Results: Overall satisfaction was high in both groups. The lowest satisfaction was with information about how the patients would receive the results of the examination. More patients in the intervention group than in the standard-care group knew how the 18F-FDG PET/CT examination would be conducted. Descriptive data suggest that image quality was slightly better in the intervention group than in the standard-care group, but none of the outcomes significantly differed between the groups. However, several obstacles were encountered during recruitment that led to insufficient power to detect differences. Also, only 54 of 75 patients (72%) in the intervention group utilized the web-based information. However, those who did utilize the information were satisfied with it and found it helpful.

    Conclusion: The effects of web-based information need to be investigated in a larger sample of patients. Having access to improved information before undergoing 18F-FDG PET/CT may help patients prepare for and undergo the examination. It may also improve image quality. However, this possibility needs to be investigated using image quality as the primary outcome. The results may be used to improve patient information and care and thereby optimize the 18F-FDG PET/CT procedure.

  • 11.
    Andriopoulos, Thanos
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Olsson, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Hägg Sylvén, Ylva
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Sjöström, Jonas
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media, Information Systems.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Grönqvist, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Commencement of and Retention in Web-Based Interventions and Response to Prompts and Reminders: Longitudinal Observational Study Based on Two Randomized Controlled Trials2021In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 23, no 3, article id e24590Article in journal (Refereed)
    Abstract [en]

    Background: Web-based interventions are effective for several psychological problems. However, recruitment, adherence, and missing data are challenges when evaluating these interventions. Objective: This study aimed to describe the use patterns during the commencement phase, possible retention patterns (continuation of data provision), and responses to prompts and reminders among participants in 2 randomized controlled trials (RCTs) evaluating web-based interventions. Methods: Data on use patterns logged in 2 RCTs aiming to reduce symptoms of anxiety and depression among adult patients recently diagnosed with cancer (AdultCan RCT) and patients with a recent myocardial infarction (Heart RCT) were analyzed. The web-based intervention in the AdultCan trial consisted of unguided self-help and psychoeducation and that in the Heart trial consisted of therapist-supported cognitive behavioral therapy. In total, 2360 participants' use patterns at first log-in, including data collection at baseline (ie, commencement) and at 2 follow-ups, were analyzed. Both the intervention and comparison groups were analyzed. Results: At commencement, 70.85% (909/1283) and 86.82% (935/1077) of the participants in AdultCan and Heart RCTs, respectively, logged in and completed baseline data collection after receiving a welcome email with log-in credentials. The median duration of the first log-in was 44 minutes and 38 minutes in AdultCan and Heart RCTs, respectively. Slightly less than half of the participants' first log-ins were completed outside standard office hours. More than 80% (92/114 and 103/111) of the participants in both trials explored the intervention within 2 weeks of being randomized to the treatment group, with a median duration of 7 minutes and 47 minutes in AdultCan and Heart RCTs, respectively. There was a significant association between intervention exploration time during the first 2 weeks and retention in the Heart trial but not in the AdultCan trial. However, the control group was most likely to retain and provide complete follow-up data. Across the 3 time points of data collection explored in this study, the proportion of participants responding to all questionnaires within 1 week from the prompt, without a reminder, varied between 35.45% (413/1165) and 66.3% (112/169). After 2 reminders, up to 97.6% (165/169) of the participants responded. Conclusions: Most participants in both RCTs completed the baseline questionnaires within 1 week of receiving the welcome email. Approximately half of them answered questions at baseline data collection outside office hours, suggesting that the time flexibility inherent in web-based interventions contributes to commencement and use. In contrast to what was expected, the intervention groups generally had lower completion rates than the comparison groups. About half of the participants completed the questionnaires without a reminder, but thereafter, reminders contributed to both baseline and follow-up retention, suggesting they were effective. Strategies to increase commencement of and retention in eHealth interventions are important for the future development of effective interventions and relevant research.

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  • 12.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Brandberg, Yvonne
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Feldman, Inna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology. Dept. of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Cost-utility analysis of individual psychosocial support interventions for breast cancer patients in a randomized controlled study2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 3, p. 251-258Article in journal (Refereed)
    Abstract [en]

    Background The Distress Thermometer (DT) has been used in psycho-oncology research across the globe and has been recommended as a clinical tool to be used routinely in cancer settings to detect clinically significant distress. We sought to characterize the translation and validation of the DT in cancer patients in different countries and cultures and summarize how the translated versions function to detect clinically significant distress. Methods An electronic mail survey was sent to the members of the International Psychosocial Oncology Society Federation of Psycho-Oncology Societies and electronic searches of English language databases were conducted to identify translations of the DT and studies designed to validate these translations. Results Our efforts yielded a total of 21 non-English translations of the DT; 18 of these were validated in studies designed for that purpose. A variety of instruments were used in receiver operating characteristic curve analysis to derive an optimal cut-off score indicative of clinically significant distress. Cut-off scores varied by language, country, and clinical setting and to sample characteristics. In the majority of studies, a score of 4 maximized sensitivity and specificity relative to an established criterion. Conclusions These findings provide a broad, international perspective on the current state of psychosocial screening using the DT. Findings also demonstrate widespread awareness of the need for psychological and social support of persons diagnosed with and treated for cancer.

  • 13.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nurse student perceptions of blended learning in a postgraduate course in cancer care2012Article in journal (Refereed)
  • 14.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Sjödén, Per-Olow
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Bergh, Jonas
    Hellbom, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Brandberg, Yvonne
    Individual psychosocial support for breast cancer patients: A randomized study of nurse vs. psychologist interventions and standard care2007In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 30, no 3, p. E10-E19Article in journal (Refereed)
    Abstract [en]

    In a prospective, randomized study, an individual psychosocial support intervention performed by specially trained oncology nurses, or psychologists, were compared with standard care. Consecutive primary breast cancer patients about to start adjuvant therapy (n = 179) were included. Data were supplied by the questionnaires European Organisation for Research and Treatment of Cancer Quality of Life Study Group Core Quality of life questionnaire with 30 questions (EORTC QLQ-C30) and Breast Cancer Module with 23 questions (BR23), the Hospital Anxiety and Depression Scale, Spielberger's State-Trait Anxiety Inventory, and the Impact of Event Scale before randomization and 1, 3, and 6 months later. Patient files provided data on utilization of psychosocial support offered in routine care. Global quality of life/health status, nausea and vomiting, and systemic therapy side effects were the subscales showing significant Group by Time interactions, favoring the interventions. Intervention groups improved statistically significantly more than the standard care group regarding insomnia, dyspnea, and financial difficulties. Nurse patients experienced less intrusion compared with the standard care group. All groups showed statistically and clinically significant improvements with time on several subscales. The intervention groups, however, improved to a greater extent. Fewer patients in the intervention groups used psychosocial hospital support compared with the standard care group. In conclusion, psychosocial support by specially trained nurses using techniques derived from cognitive behavioral therapy is beneficial for breast cancer patients and may be a realistic alternative in routine cancer care.

  • 15.
    Arving, Cecilia
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Wadensten, Barbro
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Registered Nurses' Thoughts on Blended Learning in a Postgraduate Course in Cancer care: Content Analyses of Web Surveys and a Focus Group Interview2014In: Journal of Cancer Education, ISSN 0885-8195, E-ISSN 1543-0154, Vol. 29, no 2, p. 278-283Article in journal (Refereed)
    Abstract [en]

    Purpose of the research was to describe registered nurses' (RNs) (n = 53) thoughts on the blended learning format in a 'specialist nursing programme in cancer care'. The study was conducted in autumn 2007 and 2008. A content analysis of answers to open-ended questions in a web-based questionnaire and a focus group interview were carried out. The analysis revealed that the RNs appreciated blended learning. The web lectures facilitated learning and gave RNs access to the education at any time. However, according to the RNs, knowledge is gained through interaction between RNs and teachers, and this aspect needed to be improved. The RNs also thought that the content of the seminars on campus should focus on evidence-based nursing knowledge and practical skills, not just taught as stable facts and procedures. The result from the present study could help to improve the design and content of advanced nursing courses using a blended learning format.

  • 16. Ax, Anna-Karin
    et al.
    Husberg, Magnus
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Cancer precision medicine.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Department of Sport Science and Physical Education, University of Agder, Kristiansand, Norway.
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Sjövall, Katarina
    Börjeson, Sussanne
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Davidson, Thomas
    Cost-effectiveness of different exercise intensities during oncological treatment in the Phys-Can RCT2023In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 62, no 4, p. 414-421Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cost-effectiveness is important in the prioritisation between interventions in health care. Exercise is cost-effective compared to usual care during oncological treatment; however, the significance of exercise intensity to the cost-effectiveness is unclear. In the present study, we aimed to evaluate the long-term cost-effectiveness of the randomised controlled trial Phys-Can, a six-month exercise programme of high (HI) or low-to-moderate intensity (LMI) during (neo)adjuvant oncological treatment.

    METHODS: A cost-effectiveness analysis was performed, based on 189 participants with breast, colorectal, or prostate cancer (HI: n = 99 and LMI: n = 90) from the Phys-Can RCT in Sweden. Costs were estimated from a societal perspective, and included cost of the exercise intervention, health care utilisation and productivity loss. Health outcomes were assessed as quality-adjusted life-years (QALYs), using EQ-5D-5L at baseline, post intervention and 12 months after the completion of the intervention.

    RESULTS: At 12-month follow-up after the intervention, the total cost per participant did not differ significantly between HI (€27,314) and LMI exercise (€29,788). There was no significant difference in health outcome between the intensity groups. On average HI generated 1.190 QALYs and LMI 1.185 QALYs. The mean incremental cost-effectiveness ratio indicated that HI was cost effective compared with LMI, but the uncertainty was large.

    CONCLUSIONS: We conclude that HI and LMI exercise have similar costs and effects during oncological treatment. Hence, based on cost-effectiveness, we suggest that decision makers and clinicians can consider implementing both HI and LMI exercise programmes and recommend either intensity to the patients with cancer during oncological treatment to facilitate improvement of health.

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  • 17.
    Ax, Anna-Karin
    et al.
    Department of Oncology, Linköping University, Linköping, Sweden; Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
    Husberg, Magnus
    Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Department of Sport Science and Physical Education, University of Agder, Kristiansand, Norway.
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Sjövall, Katarina
    Department of Oncology, Faculty of Health Sciences, Kristianstad University, Kristianstad, Sweden.
    Börjeson, Sussanne
    Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Davidson, Thomas
    Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
    Long-term resource utilisation and associated costs of exercise during (neo)adjuvant oncological treatment: the Phys-Can project2022In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 61, no 7, p. 888-896Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Exercise during oncological treatment is beneficial to patient health and can counteract the side effects of treatment. Knowledge of the societal costs associated with an exercise intervention, however, is limited. The aims of the present study were to evaluate the long-term resource utilisation and societal costs of an exercise intervention conducted during (neo)adjuvant oncological treatment in a randomised control trial (RCT) versus usual care (UC), and to compare high-intensity (HI) versus low-to-moderate intensity (LMI) exercise in the RCT.

    METHODS: We used data from the Physical Training and Cancer (Phys-Can) project. In the RCT, 577 participants were randomised to HI or to LMI of combined endurance and resistance training for 6 months, during oncological treatment. The project also included 89 participants with UC in a longitudinal observational study. We measured at baseline and after 18 months. Resource utilisation and costs of the exercise intervention, health care, and productivity loss were compared using analyses of covariance (RCT vs. UC) and t test (HI vs. LMI).

    RESULTS: Complete data were available for 619 participants (RCT HI: n = 269, LMI: n = 265, and UC: n = 85). We found no difference in total societal costs between the exercise intervention groups in the RCT and UC. However, participants in the RCT had lower rates of disability pension days (p < .001), corresponding costs (p = .001), and pharmacy costs (p = .018) than the UC group. Nor did we find differences in resource utilisation or costs between HI and LMI exercise int the RCT.

    CONCLUSION: Our study showed no difference in total societal costs between the comprehensive exercise intervention and UC or between the exercise intensities. This suggests that exercise, with its well-documented health benefits during oncological treatment, produces neither additional costs nor savings.

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  • 18. Ax, Anna-Karin
    et al.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Carlsson, Maria E.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Department of Public Health, Sport and Nutrition, University of Agder.
    Börjeson, Sussanne
    Exercise: A positive feature on functioning in daily life during cancer treatment — Experiences from the Phys-Can study2020In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 44, article id 101713Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Impaired functioning due to cancer treatment is a challenge for daily life. Exercise during treatment can improve functioning. However, research describing experiences of how exercise affects activities of daily life is limited. We aimed to explore how individuals with cancer receiving curative treatment and participating in an exercise intervention experienced their functioning in daily life.

    METHODS: Twenty-one participants were recruited from Phys-Can, an exercise intervention study. Semi-structured interviews were conducted after the intervention had finished, and data was analysed using thematic analysis.

    RESULTS: Two main themes evolved: "Striving to maintain a normal life in a new context" and "Struggling with impairments from side effects of cancer treatment". The supervised group exercise proved popular, and participants reported positive effects on physical and psychological functioning, as well as social and informative support from other participants. Participants struggled with impaired cognitive and physical functioning and exhaustion. They strove to maintain a normal life by adjusting their activities.

    CONCLUSIONS: Perceived physical and psychological benefits from exercise during cancer treatment suggest that exercise should be a part of cancer rehabilitation to facilitate activities and participation in daily life. Striving to maintain a normal life during cancer treatment is vital, and adjustments are needed to maintain activities and participation in daily life. Cancer nurses should motivate patients to engage in physical activity and encourage the introduction of exercise as part of their rehabilitation. They could also support patients in making adjustments to maintain functioning in daily life.

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  • 19. Ax, Anna-Karin
    et al.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Lyth, Johan
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Börjeson, Sussanne
    Short- and long-term effect of high versus low-to-moderate intensity exercise to optimise health-related quality of life after oncological treatment-results from the Phys-Can project2022In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 30, no 7, p. 5949-5963Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study aimed to evaluate the effect of high intensity (HI) vs low-to-moderate intensity (LMI) exercise on health-related quality of life (HRQoL) up to 18 months after commencement of oncological treatment in patients with breast, colorectal or prostate cancer. In addition, we conducted a comparison with usual care (UC).

    METHODS: Patients scheduled for (neo)adjuvant oncological treatment (n = 577) were randomly assigned to 6 months of combined resistance and endurance training of HI or LMI. A longitudinal descriptive study (UC) included participants (n = 89) immediately before the RCT started. HRQoL was assessed by EORTC QLQ-C30 at baseline, 3, 6 and 18 months (1 year after completed exercise intervention) follow-up. Linear mixed models were used to study the groups over time.

    RESULTS: Directly after the intervention, HI scored significant (P = 0.02), but not clinically relevant, higher pain compared with LMI. No other significant difference in HRQoL was found between the exercise intensities over time. Clinically meaningful improvements in HRQoL over time were detected within both exercise intensities. We found favourable significant differences in HRQoL in both exercise intensities compared with UC over time.

    CONCLUSION: This study adds to the strong evidence of positive effect of exercise and shows that exercise, regardless of intensity, can have beneficial effects on HRQoL during oncological treatment and also for a substantial time after completion of an exercise intervention. In this study, for one year after.

    IMPLICATIONS FOR CANCER SURVIVORS: Patients can be advised to exercise at either intensity level according to their personal preferences, and still benefit from both short-term and long-term improvements in HRQoL.

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  • 20. Backman, Malin
    et al.
    Wengstrom, Yvonne
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Sköldengen, Ida
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science.
    Hellersted Börjesson, Susanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Tärnbro, Sara
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science.
    Berglund, Åke
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    A randomized pilot study with daily walking during adjuvant chemotherapy for patients with breast and colorectal cancer2014In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 53, no 4, p. 510-520Article in journal (Refereed)
    Abstract [en]

    Background. Physical activity during chemotherapy has been shown in several studies to reduce fatigue, improve symptoms and impact positively on health-related quality of life (HRQoL). Challenges associated with intervention studies on physical activity during cancer treatment relate to consistent adherence. The primary objective was to study feasibility and adherence of physical activity intervention among patients with cancer during adjuvant chemotherapy treatment. The secondary objective was to investigate the effects of physical activity on health aspects, including HRQoL, symptoms and surrogate markers for cardiovascular disease. Material and methods. This randomized controlled trial included patients with breast cancer (BRCA) and colorectal cancer (CRC) during adjuvant chemotherapy. The intervention continued for 10 weeks and included daily walks of 10 000 steps and a weekly supervised group walk. Adherence was assessed by a pedometer and the number of participants who reported step counts every week and percentage of participants who achieved the target steps every week. Results. Adherence average reached 91% during the intervention period; in total 74% completed the exercise intervention. The majority of the participants achieved an average of 83% of the target of 10 000 steps per day for 10 weeks. There was a significant increase in daily physical activity (p = 0.016) in the intervention group. Significant differences were also found for some breast cancer-specific symptoms [swelling, mobility and pain (p = 0.045)]. The study showed a relatively small weight gain an average of 0.9 kg in the intervention group and 1.3 kg in the control group. Conclusion. Physical activity in the form of walking is feasible during adjuvant chemotherapy treatment despite increasing symptoms. The physical activity increased in the intervention group during the study time and had a positive impact on breast symptoms and the weight gain was lower in comparison to previous studies.

  • 21.
    Berglund, Åke
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Byström, Per
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Frödin, Jan-Erik
    Pedersen, Dorte
    Letocha, Henry
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    An explorative randomised phase II study of sequential chemotherapy in advanced upper gastrointestinal cancer2010In: Medical Oncology, ISSN 1357-0560, E-ISSN 1559-131X, Vol. 27, no 1, p. 65-72Article in journal (Refereed)
    Abstract [en]

    The feasibility, safety, and efficacy of planned sequential administration of docetaxel and irinotecan with 5-fluorouracil (5-FU)/leucovorin in advanced upper gastrointestinal adenocarcinoma (UGIA) are unknown. Seventy-three patients with gastric (GC; n = 22), pancreatic (PC; n = 28) or biliary cancer (BC; n = 23) were randomised to start with 45 mg/m2 docetaxel or 180 mg/m2 irinotecan combined with 5-FU/leucovorin every 2nd week. After every 2nd course, the patients were crossed over to the other combination. Treatment was given for a maximum of 12 courses. Quality-of-life (QoL) was evaluated during the first two months using the EORTC QLQ-C30. Eighteen patients (25%; GC 32%, PC 21%, BC 22%) demonstrated partial response (PR) and 21 (29%) had prolonged stable disease. Mean QoL scores were low at baseline. Twenty-three (32%) patients had improved QoL using a summary measure and 13 were stable. Median time to progression was 4.4 months and overall survival 8.2 months. The treatments were reasonably well tolerated. Grade 3–4 toxicities were slightly more common for the docetaxel combination. There were two treatment-related deaths. Planned sequential treatment with docetaxel or irinotecan with 5-FU/leucovorin is feasible, reasonably tolerable and appears active in advanced UGIA.

  • 22.
    Berntsen, Sveinung
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Aaronson, Neil K
    Buffart, Laurien
    Börjeson, Sussanne
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Hellbom, Maria
    Hojman, Pernille
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Pingel, Ronnie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Raastad, Truls
    Velikova, Galina
    Åsenlöf, P.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Design of a randomized controlled trial of physical training and cancer (Phys-Can) - the impact of exercise intensity on cancer related fatigue, quality of life and disease outcome2017In: BMC Cancer, E-ISSN 1471-2407, Vol. 17, no 1, article id 218Article in journal (Refereed)
    Abstract [en]

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

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

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

    TRIAL REGISTRATION: NCT02473003 , October, 2014.

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  • 23. Buffart, L. M.
    et al.
    Schreurs, M. A. C.
    Abrahams, H. J. G.
    Kalter, J.
    Aaronson, N. K.
    Jacobsen, P. B.
    Newton, R. U.
    Courneya, K. S.
    Armes, J.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Braamse, A. M.
    Brandberg, Y.
    Dekker, J.
    Ferguson, R. J.
    Gielissen, M. F.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Goedendorp, M. M.
    Graves, K. D.
    Heiney, S. P.
    Horne, R.
    Hunter, M. S.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Northouse, L. L.
    Oldenburg, H. S.
    Prins, J. B.
    Savard, J.
    van Beurden, M.
    van den Berg, S. W.
    Brug, J.
    Knoop, H.
    Verdonck-de Leeuw, I. M.
    Effects and moderators of coping skills training on symptoms of depression and anxiety in patients with cancer: Aggregate data and individual patient data meta-analyses2020In: Clinical Psychology Review, ISSN 0272-7358, E-ISSN 1873-7811, Vol. 80, article id 101882Article, review/survey (Refereed)
    Abstract [en]

    PURPOSE: This study evaluated the effects of coping skills training (CST) on symptoms of depression and anxiety in cancer patients, and investigated moderators of the effects.

    METHODS: Overall effects and intervention-related moderators were studied in meta-analyses of pooled aggregate data from 38 randomized controlled trials (RCTs). Patient-related moderators were examined using linear mixed-effect models with interaction tests on pooled individual patient data (n = 1953) from 15 of the RCTs.

    RESULTS: CST had a statistically significant but small effect on depression (g = -0.31,95% confidence interval (CI) = -0.40;-0.22) and anxiety (g = -0.32,95%CI = -0.41;-0.24) symptoms. Effects on depression symptoms were significantly larger for interventions delivered face-to-face (p = .003), led by a psychologist (p = .02) and targeted to patients with psychological distress (p = .002). Significantly larger reductions in anxiety symptoms were found in younger patients (pinteraction < 0.025), with the largest reductions in patients <50 years (β = -0.31,95%CI = -0.44;-0.18) and no significant effects in patients ≥70 years. Effects of CST on depression (β = -0.16,95%CI = -0.25;-0.07) and anxiety (β = -0.24,95%CI = -0.33;-0.14) symptoms were significant in patients who received chemotherapy but not in patients who did not (pinteraction < 0.05).

    CONCLUSIONS: CST significantly reduced symptoms of depression and anxiety in cancer patients, and particularly when delivered face-to-face, provided by a psychologist, targeted to patients with psychological distress, and given to patients who were younger and received chemotherapy.

  • 24.
    Byström, P.
    et al.
    Department of Oncology and Pathology, Karolinska Institutet, Stockholm, .
    Berglund, Åke
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Wernroth, Mona-Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Larsson, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Einarsson, R.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    An explorative study on the clinical utility of baseline and serial serum tumour marker measurements in advanced upper gastrointestinal cancer2010In: Oncology Reports, ISSN 1021-335X, E-ISSN 1791-2431, Vol. 24, no 6, p. 1645-1652Article in journal (Refereed)
    Abstract [en]

    The value of early tumour marker changes during palliative chemotherapy in patients with upper gastrointestinal adenocarcinoma (UGIA) is unclear. Seventy-three patients with advanced UGIA were randomised to receive 45 mg/m2 docetaxel or 180 mg/m2 irinotecan with 5-FU/leucovorin. After every 2nd course the patients were crossed over to the other regimen. Serum was sampled before start of chemotherapy and every 2nd week during 8 weeks for CEA, TPA, TPS, CA72-4, CA19-9 and CA242 measurements. Eighteen patients (25%) had partial response (PR) and 21 patients had stable disease for at least 4 months (SD4). All baseline marker levels, except CA72-4, correlated with time to progression and survival. Patients with normal levels, except CA72-4, also had more clinical responses (PR+SD4) than patients with elevated values. Tumour marker changes early during treatment provided modest predictive information for tumour response and survival. A model combining baseline level, the change and the interaction between them gave the best prediction of outcome, however, insignificantly better than baseline level for all markers except CA242. Baseline tumour marker levels provide prognostic information for patients with UGIA on palliative chemotherapy. Early changes generally failed to provide accurate information for tumour response and survival.

  • 25.
    Byström, Per
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Berglund, Åke
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Wernroth, Lisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Larsson, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Biochemial structure and function.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Evaluation of predictive markers for patients with advanced colorectal cancer2012In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 51, no 7, p. 849-859Article in journal (Refereed)
    Abstract [en]

    Background.

    To evaluate the predictive and prognostic value of serum and plasma tumor markers, in comparison with clinical and biomedical parameters for response rate (RR), progression-free survival (PFS) and overall survival (OS) among patients with metastatic colorectal cancer (mCRC) treated with combination chemotherapy.

    Material and methods.

    One-hundred and six patients with mCRC from three centers, part of a multicenter study, received irinotecan with the Nordic bolus 5-fluorouracil (5-FU) and folinic acid schedule (FLIRI) or the de Gramont schedule (Lv5FU2-IRI). Blood samples for CEA, CA19-9, TPA, TIMP-1, SAA, transthyretin and CRP were taken at baseline and after two, four and eight weeks of treatment. Tumor marker levels at baseline and longitudinally were compared with responses evaluated (CT/MRI) after two and four months of treatment. The correlations to RR, PFS and OS were evaluated with regression analyses.

    Results.

    A significant correlation to OS was seen for baseline levels of all markers. In multivariate analyses with clinical parameters, TPA, CRP, SAA and TIMP-1 provided independent information. The baseline values of CEA, TPA and TIMP-1 were also significantly correlated to PFS and TPA to RR. Changes during treatment, i.e. the slope gave with the exception of CA19-9 for OS less information about outcomes. The best correlation to response was seen for CEA, CA19-9 and TPA with AUC values of 0.78, 0.83 and 0.79, respectively, using a combined model based upon an interaction between the slope and the baseline value.

    Conclusions.

    Baseline tumor markers together with clinical parameters provide prognostic information about survival in patients with mCRC. The ability of the individual tumor markers to predict treatment response and PFS is limited. Changes in marker levels during the first two months of treatment are less informative of outcome.

  • 26.
    Byström, Per
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Berglund, Åke
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Sorbye, H
    Tveit, KM
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Health-related quality of life in patients with metastatic colorectal cancer receiving palliative combination chemotherapy2012Article in journal (Refereed)
  • 27.
    Börjeson, Sussanne
    et al.
    Linköpings universitet.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Omvårdnad vid cytostatikabehandling2011In: Omvårdnad vid bröstcancer: nationellt vårdprogram 2011: giltighetstid 2011-2012 / [ed] Ledningsgruppen sjuksköterskor i bröstcancervården, Stockholm: Onkologiskt Centrum Stockholm-Gotlandregionen , 2011, 2. uppl., p. 34-40Chapter in book (Other (popular science, discussion, etc.))
  • 28.
    Börjeson, Sussanne
    et al.
    Linköpings universitet.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Onkologisk omvårdnad2008In: Onkologi / [ed] Ulrik Ringborg, Roger Henriksson & Tina Dalianis, Stockholm: Liber, 2008, 2. uppl., p. 232-242Chapter in book (Other academic)
  • 29.
    Demmelmaier, Ingrid
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Brooke, Hannah L.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Henriksson, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Mazzoni, Anne-Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Helgesen Björke, Ann Christin
    University of Agder, Department of Sport Science and Physical Education, Kristiansand, Norway .
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Ax, Anna-Karin
    Linköping University Department of Oncology and Department of Medical and Health Sciences.
    Sjövall, Katarina
    Lund University, Department of Oncology and Skåne University Hospital, Department of Oncology.
    Hellbom, Maria
    Stockholm Health Care Services, Centre for Cancer Rehabilitation, Stockholm, Sweden.
    Pingel, Ronnie
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Statistics.
    Lindman, Henrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Johansson, Silvia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Galina, Velikova
    University of Leeds, Leeds Cancer Centre, Leeds Institute of Medical Research at St James's, Leeds, UK .
    Raastad, Truls
    Norwegian School of Sport Sciences, Department of Physical Performance, Oslo, Norway .
    M Buffart, Laurien
    Amsterdam Public Health Research Institute, Department of Epidemiology and Biostatistics, and Amsterdam UMC, Department of Medical Oncology, Cancer Center Amsterdam, Amsterdam, The Netherlands .
    Åsenlöf, Pernilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Åsenlöf: Physiotheraphy.
    Aaronson, Neil K
    The Netherlands Cancer Institute, Division of Psychosocial Research & Epidemiology, Amsterdam, The Netherlands .
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Börjesson, Sussanne
    , Linköping University Department of Oncology and Department of Medical and Health Sciences, Linköping, Sweden .
    Berntsen, Sveinung
    University of Agder, Department of Sport Science and Physical Education, Kristiansand, Norway .
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Does exercise intensity matter for fatigue during (neo)adjuvant cancer treatment?: The PhysCan randomized clinical trial2021In: Scandinavian Journal of Medicine and Science in Sports, ISSN 0905-7188, E-ISSN 1600-0838, Vol. 31, no 5, p. 1144-1159Article in journal (Refereed)
    Abstract [en]

    Exercise during cancer treatment improves cancer-related fatigue (CRF), but the importance of exercise intensity for CRF is unclear. We compared the effects of high- vs low-to-moderate-intensity exercise with or without additional behavior change support (BCS) on CRF in patients undergoing (neo-)adjuvant cancer treatment. This was a multicenter, 2x2 factorial design randomized controlled trial (Clinical Trials NCT02473003) in Sweden. Participants recently diagnosed with breast (n = 457), prostate (n = 97) or colorectal (n = 23) cancer undergoing (neo-)adjuvant treatment were randomized to high intensity (n = 144), low-to-moderate intensity (n = 144), high intensity with BCS (n = 144) or low-to-moderate intensity with BCS (n = 145). The 6-month exercise intervention included supervised resistance training and home-based endurance training. CRF was assessed by Multidimensional Fatigue Inventory (MFI, five subscales score range 4-20), and Functional Assessment of Chronic Illness Therapy-Fatigue scale (FACIT-F, score range 0-52). Multiple linear regression for main factorial effects was performed according to intention-to-treat, with post-intervention CRF as primary endpoint. Overall, 577 participants (mean age 58.7 years) were randomized. Participants randomized to high- vs low-to-moderate-intensity exercise had lower physical fatigue (MFI Physical Fatigue subscale; mean difference -1.05 [95% CI: -1.85, -0.25]), but the difference was not clinically important (ie <2). We found no differences in other CRF dimensions and no effect of additional BCS. There were few minor adverse events. For CRF, patients undergoing (neo-)adjuvant treatment for breast, prostate or colorectal cancer can safely exercise at high- or low-to-moderate intensity, according to their own preferences. Additional BCS does not provide extra benefit for CRF in supervised, well-controlled exercise interventions.

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  • 30.
    Forslund, Marina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Ottenblad, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Karolinska Univ Hosp, Dept Nutr & Dietet, Stockholm, Sweden.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Experiences of a nutrition intervention: A qualitative study within a randomised controlled trial in men undergoing radiotherapy for prostate cancer2020In: Nutrition & Dietetics, ISSN 1446-6368, E-ISSN 1747-0080, Vol. 77, no 2, p. 223-230Article in journal (Refereed)
    Abstract [en]

    AIM: Men with prostate cancer undergoing radiotherapy may experience acute and late bowel symptoms. Nutrition interventions have shown some benefits, however, adherence tends to decline over time. Qualitative studies, carried out after an intervention, are important to help explain trial results. The aim of the present study was to explore patient experience of participating in a nutrition intervention in a randomised controlled trial, with a focus on facilitators and barriers to adherence.

    METHODS: Semistructured interviews were conducted with 15 men with prostate cancer recruited from a randomised controlled trial on a nutrition intervention during radiotherapy. Interviews were analysed with content analysis with an inductive approach.

    RESULTS: The informants were motivated to make dietary changes to avoid bowel symptoms. Social support, a feeling of contributing to the greater good, prior knowledge, dietary information and a small need for behaviour change facilitated adherence. Feeling limited, wanting to decide for themselves, the timing of the intervention, unmet expectations of dietary advice and loss of motivation, were described as barriers for adherence.

    CONCLUSIONS: Future nutrition intervention trials may benefit from involving significant others to a greater degree, as well as offering pre-set recipes and strategies to manage social events, and more sessions with the dietitian for patients in need of more support. Tailored interventions based on the individual's preferences, context and prior knowledge about food may further facilitate adherence.

  • 31.
    Forslund, Marina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Ottenblad, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology. Karolinska Univ Hosp, Dept Nutr & Dietet, Stockholm, Sweden.
    Ginman, Claes
    Cent Hosp Karlstad, Dept Clin Oncol, Karlstad, Sweden.
    Johansson, Silvia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Effects of a nutrition intervention on acute and late bowel symptoms and health-related quality of life up to 24 months post radiotherapy in patients with prostate cancer: a multicentre randomised controlled trial.2020In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 28, no 7, p. 3331-3342Article in journal (Refereed)
    Abstract [en]

    Purpose: Radiotherapy to the prostate gland and pelvic lymph nodes may cause acute and late bowel symptoms and diminish quality of life. The aim was to study the effects of a nutrition intervention on bowel symptoms and health-related quality of life, compared with standard care.

    Methods: Patients were randomised to a nutrition intervention (n = 92) aiming to replace insoluble fibres with soluble and reduce intake of lactose, or a standard care group (n = 88) who were recommended to maintain their habitual diet. Bowel symptoms, health-related quality of life and intake of fibre and lactose-containing foods were assessed up to 24 months after radiotherapy completion. Multiple linear regression was used to analyse the effects of the nutrition intervention on bowel symptoms during the acute (up to 2 months post radiotherapy) and the late (7 to 24 months post radiotherapy) phase.

    Results: Most symptoms and functioning worsened during the acute phase, and improved during the late phase in both the intervention and standard care groups. The nutrition intervention was associated with less blood in stools (p = 0.047), flatulence (p = 0.014) and increased loss of appetite (p = 0.018) during the acute phase, and more bloated abdomen in the late phase (p = 0.029). However, these associations were clinically trivial or small.

    Conclusions: The effect of the nutrition intervention related to dietary fibre and lactose on bowel symptoms from pelvic RT was small and inconclusive, although some minor and transient improvements were observed. The results do not support routine nutrition intervention of this type to reduce adverse effects from pelvic radiotherapy.

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  • 32.
    Grönqvist, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Olsson, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Held, Claes
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Sjöström, Jonas
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Lindahl Norberg, Annika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Centre for Occupational and Environmental Medicine, Stockholm County Council, Stockholm, Sweden..
    Hovén, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Sanderman, Robbert
    Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands; Department of Psychology, Health and Technology, University of Twente, Enschede, Netherlands..
    van Achterberg, Theo
    Academic Centre for Nursing and Midwifery, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study2017In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 19, no 5, article id e173Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce.

    OBJECTIVE:

    The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment.

    METHODS:

    Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached.

    RESULTS:

    The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity.

    CONCLUSIONS:

    Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way.

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  • 33.
    Hamberg Levedahl, Kerstin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Nilsson, Annika
    Univ Gävle, Dept Caring Sci, Gävle, Sweden..
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    How persons with systemic mastocytosis describe the time between symptom onset and receiving diagnosis2022In: Primary Health Care Research and Development, ISSN 1463-4236, E-ISSN 1477-1128, Vol. 23, article id e54Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of the study was to explore how persons with systemic mastocytosis (SM) described the time between the onset of symptoms and signs and getting the diagnosis.

    Background: SM is a rare disease caused by the accumulation of clonal mast cells with abnormal function. The symptoms and signs of the disease are varied, often diffuse and affect individuals differently. Due to this complexity, a multi-disciplinary diagnostic approach is required, in which general practitioners play an important part in identifying and referring patients relevant for such investigations.

    Methods: Sixteen persons with SM were interviewed about their experiences of the time before the diagnosis was received. Systematic text condensation was used in the analysis process.

    Findings: The time between symptom and signs onset and diagnosis was perceived as difficult. SM often had a complex and unpredictable effect on a person's daily life, long before diagnosis. In the analysis, three themes were found. Having symptoms and signs with an unknown cause included the participants' descriptions of numerous symptoms and signs, often years before diagnosis. These could be severe and result in worries for both participants and their next-of-kin. Dealing with the symptoms and signs encompassed the different ways in which the participants coped with the symptoms and signs, and sought relief. Being a patient without a diagnosis underlined the lack of information and knowledge within healthcare, often resulting in a delayed or incorrect diagnosis. The study highlighted the importance of a person-centred approach and the need to increase knowledge of the disease within primary care, to shorten this stressful and vulnerable time.

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  • 34.
    Hauffman, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Alfonsson, Sven
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare. Centre for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institute; Stockholm Health Care Services, Stockholm County Council, Stockholm, Sweden.
    Bill-Axelson, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Urology.
    Bergkvist, Leif
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Centre for Clinical Research, County of Västmanland.
    Forslund, Marina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Mattsson, Susanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Åsenlöf: Physiotheraphy. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Cocreated internet-based stepped care for individuals with cancer and concurrent symptoms of anxiety and depression: Results from the U-CARE AdultCan randomized controlled trial2020In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 29, no 12, p. 2012-2018Article in journal (Refereed)
    Abstract [en]

    Objective The aim was to evaluate the effects of cocreated internet-based stepped care (iCAN-DO) on anxiety, depression, posttraumatic stress, and health-related quality of life (HRQoL) in individuals with cancer and self-reported anxiety and/or depression symptoms, compared with standard care.

    Methods Clinically recruited individuals with breast, colorectal, or prostate cancer underwent online screening with the Hospital Anxiety and Depression Scale (HADS). Those with anxiety and/or depression symptoms (>7 on any of the HADS subscales) were randomized to iCAN-DO or standard care. iCAN-DO comprised psychoeducation and self-care strategies (step 1) and internet-based cognitive behavioral therapy (iCBT, step 2). Data were collected before randomization and at 1, 4, 7, and 10 months and analyzed with intention-to-treat regression analysis and randomization tests.

    Results Online screening identified 245 (27%) of 909 individuals who reported anxiety and/or depression symptoms. They were randomized to iCAN-DO (n  = 124) or standard care (n = 121). Of them 49% completed the 10-month assessment, and in the iCAN-DO group 85% accessed step 1 and 13% underwent iCBT. iCAN-DO decreased the levels of symptoms of depression (−0.54, 95% confidence interval: −1.08 to −0.01, P < .05) and the proportion of individuals with symptoms of depression (P < .01) at 10 months, compared with standard care, according to HADS. There were no significant effects on anxiety, posttraumatic stress, or HRQoL.

    Conclusion Internet-based stepped care improves symptoms of depression in individuals with cancer. Further studies are needed to gain knowledge on how to optimize and implement internet-based support in oncology care.

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  • 35.
    Hauffman, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Alfonsson, Sven
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Karolinska Inst, Ctr Psychiat Res, Dept Clin Neurosci, Stockholm, Sweden; Stockholm Hlth Care Serv, Stockholm, Sweden.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Åsenlöf: Physiotheraphy. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Experiences of Internet-Based Stepped Care in Individuals With Cancer and Concurrent Symptoms of Anxiety and Depression: Qualitative Exploration Conducted Alongside the U-CARE AdultCan Randomized Controlled Trial2020In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 22, no 3, article id e16547Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Individuals with newly diagnosed cancer may experience impaired health in several aspects and often have a large need for information and support. About 30% will experience symptoms of anxiety and depression, with varying needs of knowledge and support. Despite this, many of these patients lack appropriate support. Internet-based support programs may offer a supplement to standard care services, but must be carefully explored from a user perspective.

    OBJECTIVE: The purpose of this study was to explore the participants' perceptions of the relevance and benefits of an internet-based stepped care program (iCAN-DO) targeting individuals with cancer and concurrent symptoms of anxiety and depression.

    METHODS: We performed a qualitative study with an inductive approach, in which we used semistructured questions to interview 15 individuals using iCAN-DO. We analyzed the interviews using content analysis.

    RESULTS: The analysis found 17 subcategories regarding the stepped care intervention, resulting in 4 categories. Participants described the need for information as large and looked upon finding information almost as a survival strategy when receiving the cancer diagnosis. iCAN-DO was seen as a useful, reliable source of information and support. It was used as a complement to standard care and as a means to inform next of kin. Increased knowledge was a foundation for continued processing of participants' own feelings. The optimal time to gain access to iCAN-DO would have been when being informed of the diagnosis. The most common denominator was feeling acknowledged and supported, but with a desire for further adaptation of the system to each individual's own situation and needs.

    CONCLUSIONS: Users saw the internet-based stepped care program as safe and reliable and used it as a complement to standard care. Similar interventions may gain from more personalized contents, being integrated into standard care, or using symptom tracking to adjust the contents. Offering this type of program close to diagnosis may provide benefits to users.

    TRIAL REGISTRATION: ClincalTrials.gov NCT-01630681; https://clinicaltrials.gov/ct2/show/NCT01630681.

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  • 36.
    Hauffman, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Alfonsson, Sven
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Mattson, Susanne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Forslund, Marina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Bill-Axelson, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Urology.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    The development of a Nurse-led Internet-based Learning and Self-care program for cancer patients with symptoms of anxiety and depression: a part of U-CARE2017In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, ISSN 0162-220X, Vol. 40, no 5, p. E9-E16Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Having access to information about the disease and being encouraged to participate in self-care activities may reduce anxiety and depression symptoms in cancer patients. Internet-based interventions may be one way to support effective self-care strategies to improve emotional well-being and health-related quality of life.

    OBJECTIVE:

    The aim of this study was to describe the development and acceptance of an Internet-based program intended to support cancer patients with anxiety and depression symptoms.

    METHODS:

    A structured collaboration between patients, clinicians, and researchers was used to develop a theory- and evidence-based interactive health communication application (IHCA) based on Orem's self-care deficit nursing theory with influences from Bandura's social learning theory and psychoeducation.

    RESULTS:

    The result is an IHCA described as a Nurse-led, Internet-based Learning and Self-care program that helps patients to perform self-care using different types of material in interaction with patients and healthcare staff. The acceptance of the program is consistent with the results of similar studies.

    CONCLUSIONS:

    Collaboration between patients, clinicians, and researchers seems to be a fruitful approach in the development of an IHCA aiming to support cancer patients' self-care strategies. Well-designed intervention studies are needed to evaluate the effects of the IHCA.

    IMPLICATIONS FOR PRACTICE:

    This article suggests a theoretical foundation for an IHCA and allows researchers and healthcare providers to take part in the discussion regarding format and content of IHCAs.

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  • 37.
    Henriksson, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Perceived barriers to and facilitators of being physically active during adjuvant cancer treatment2016In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 99, no 7, p. 1220-1226Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 38.
    Henriksson, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Phys-Can Feasibility Study: Perceived Barriers and Facilities to Exercise During Adjuvant Cancer Treatment2014Conference paper (Other academic)
  • 39.
    Henriksson, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Åsenlöf: Physiotheraphy.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    The Phys-Can study: meaningful and challenging - supervising physical exercise in a community-based setting for persons undergoing curative oncological treatment2022In: Physiotherapy Theory and Practice, ISSN 0959-3985, E-ISSN 1532-5040, Vol. 38, no 1, p. 141-150Article in journal (Refereed)
    Abstract [en]

    Introduction: Supervised exercise may improve physical function and quality of life during oncological treatment. Providing supervised exercise to all patients at hospitals may be impractical, with community-based settings (e.g. public gyms) as a possible alternative. To facilitate implementation, knowledge about the experiences of professionals who deliver exercise programs in community-based settings is crucial.

    Objective: To explore how physical therapists and personal trainers experience supervising exercise in a community-based setting for persons undergoing curative oncological treatment.

    Methods: Nine physical therapists and two personal trainers (coaches) were interviewed individually. The semi-structured interviews lasted 33-67 minutes and were analyzed using thematic analysis.

    Results: Two main themes emerged: "A meaningful task" and "A challenging task," with nine sub-themes. The coaches experienced supervising exercise for persons undergoing treatment as meaningful, as they became a link between oncology care and health promotion. They grew more confident in the role and ascertained that exercising during treatment was feasible. Challenges included managing side effects of treatment and contradictory information from oncology care staff at hospitals, advising patients not to exercise.

    Conclusion: Supervising exercise for persons undergoing oncological treatment in a community-based setting may be highly rewarding for professionals who deliver exercise programs, which is promising for implementation. However, patients receive contradictory information about exercise, which may prevent physical activity. Also, supervising exercise for persons undergoing oncological treatment requires skills training; this is suggested for inclusion in educational programs for physical therapists and others. Future research should focus on strategies for cooperation between oncology care and health promotion.

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  • 40.
    Henriksson, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Radu, Calin
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Igelström, Helena
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Is it safe to exercise during oncological treatment? A study of adverse events during endurance and resistance training - data from the Phys-Can study.2021In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 60, no 1, p. 96-105Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Few studies have systematically evaluated the risk of adverse events (AEs) among persons exercising during oncological treatment. We aimed to describe incidence and types of AEs during exercise for persons undergoing oncological treatment, and associations to exercise intensity, exercise adherence, chemotherapy treatment, initial aerobic fitness. A second aim was to compare incidence of lymphedema, periphery inserted central catheter (PICC) complications, and other new medical conditions (any illness or injury occurred during the exercise trial) between high-intensity vs low-to-moderate exercise and usual care (UC).

    METHODS: This descriptive, comparative study was based on data from an observational study including patients in an UC setting (n = 90) and a randomized exercise trial (n = 577) in which participants exercised at high-intensity (HI) or low-moderate intensity (LMI). Persons with breast, prostate, or colorectal cancer undergoing neo/adjuvant treatment were included. AEs were reported by exercise coaches, participants, and identified in medical records, as were lymphedema, PICC-complications, and new medical conditions.

    RESULTS: Coaches reported AEs for 20% of the participants, while 28% of participants self-reported AEs. The most common coach- and participant reported AEs were musculoskeletal and the majority (97%) were considered minor. HI had higher likelihood of AEs than LMI, according to both coaches (OR: 1.9 [95%CI 1.16-3.21], p=.011) and participants (OR: 3.36 [95%CI 2.00-5.62], .001). Lymphedema rates were low (4-9%) and PICC complications ranged from 15% in LMI to 23% in UC and there were no statistically significant differences between HI, LMI, and UC. There were no statistically significant differences between HI and LMI regarding new medical conditions.

    CONCLUSIONS: Exercise during treatment is safe for these patient groups in this setting, even HI exercise can be recommended if no medical contraindications are present. Similar to healthy populations, a higher risk of having minor AEs when exercising at HI in comparison to LMI may exist.

  • 41.
    Henriksson, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala universitet.
    Radu, Calin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Igelström, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Åsenlöf: Physiotheraphy.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Is it safe to exercise during oncological treatment?: A study of adverse events during exercise - data from the Phys-Can studyManuscript (preprint) (Other academic)
  • 42.
    Høyer, Marie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Bergkvist, Leif
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland.
    Ahlgren, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg.
    Lidin-Lindqvist, Annika
    Regional Oncologic Center, Uppsala University Hospital.
    Lambe, Mats
    Regional Oncologic Centre, Uppsala University Hospital; Department of medical epidemiology and biostatistics, Karolinska Institutet.
    Lampic, Claudia
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Health-related quality of life among women with breast cancer: a population-based study2011In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 50, no 7, p. 1015-1026Article in journal (Refereed)
    Abstract [en]

    Background:

    High incidence rates of breast cancer emphasize the importance of increased knowledge about the health-related quality of life (HRQoL) in this patient group. The aim of the present study was to describe and compare HRQoL among breast cancer patients shortly after diagnosis with normative data from the general population, and to investigate how clinical, demographic, and socio-economic factors and social support are associated with HRQoL.

    Material and methods:

    Participants were identified in a population-based Breast Cancer Quality Register in central Sweden. Of 1573 women newly diagnosed with breast cancer during a one-year period (2007 – 2008), 69% (n =1086) completed a questionnaire including the EORTC QLQ-C30, BR23 and the HADS.

    Results:

    Compared to age-adjusted normative data, breast cancer patients (mean age 62 years, range 25–94), especially younger women (<50 years), experienced clinically meaningful poorer HRQoL. Clinically significant levels of anxiety and depressive symptoms were found among 14% and 6% of the patients, respectively. Factors associated with more problems/symptoms among study participants included chemotherapy, lack of social support, sick leave and a poor financial situation. Adding socio-economic factors diminished the association between age and HRQoL (p > 0.05).

    Conclusion:

    Recently diagnosed breast cancer patients reported poorer HRQoL in several dimensions compared to normative data. In addition to clinical and demographic factors, an unfavorable socio-economic standing was associated with more problems/symptoms. The present findings emphasize the importance of taking a variety of factors into account when assessing HRQoL in the clinical setting.

  • 43.
    Høyer, Marie
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Ahlgren, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg.
    Bergkvist, Leif
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland.
    Lambe, Mats
    Regionalt Cancer Center Uppsala Örebro, Uppsala University Hospital; Department of medical epidemiology och biostatistics, Karolinska Institutet.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Lampic, Claudia
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Change in working time in a population-based cohort of patients with breast cancer2012In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 30, no 23, p. 2853-2860Article in journal (Refereed)
    Abstract [en]

    Purpose:

    We examined changes in working time 16 months after a breast cancer diagnosis and identified factors associated with job discontinuation and/or decreased working time.

    Patients and Methods:

    This was a population-based cohort study with 735 patients identified in the Regional Breast Cancer Quality Register of Central Sweden. The study sample consisted of 505 women (age <63 years at diagnosis) who completed questionnaires at baseline and at follow-up (on average 4 and 16 months after diagnosis, respectively). Clinical register data and questionnaire data on sociodemographic factors were obtained at baseline. Self-reported work-related data were obtained at follow-up. Odds ratios were estimated by using logistic regression models.

    Results:

    Compared with prediagnosis working time, 72% reported no change in working time, 2% reported an increase, 15% reported a decrease, and 11% did not work at follow-up. Chemotherapy increased the likelihood (odds ratio [OR], 2.45; 95% CI, 1.38 to 4.34) of job discontinuation/decreased working time. Among chemotherapy recipients, associated factors included full-time work prediagnosis (OR, 3.25; 95% CI, 1.51 to 7.01), cancer-related work limitations (OR, 5.26; 95% CI, 2.30 to 12.03), and less value attached to work (OR, 3.69; 95% CI, 1.80 to 7.54). In the nonchemotherapy group, older age (OR, 1.09; 95% CI, 1.02 to 1.17) and less value attached to work (OR, 5.00; 95% CI, 2.01 to 12.45) were associated with the outcome.

    Conclusion:

    The majority of women treated for breast cancer returned to their prediagnosis working time. Chemotherapy and cancer-related work limitations are important factors to take into account in identifying women in need of support. Moreover, it is important to consider the woman’s own valuation of labor market participation.

  • 44.
    Igelström, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Agder, Dept Publ Hlth Sport & Nutr, Kristiansand, Norway.
    Exercise during and after curative oncological treatment: a mapping review2017In: Physical Therapy Reviews, ISSN 1083-3196, E-ISSN 1743-288X, Vol. 22, no 3/4, p. 103-115Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 45.
    Igelström, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Berntsen, Sveinung
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Hetlelid, Ken
    Åsenlöf, Pernilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Physiotherapy.
    Demmelmaier, Ingrid
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Henriksson, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Arving, Cecilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Phys-Can feasibility Study: Preparing for Physical Training and Behavioral Medicine Strategies2014Conference paper (Other academic)
  • 46.
    Igelström, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Physiotherapy.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Hauffman, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Nursing Research.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Grönqvist, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Cancer precision medicine.
    Olsson, Erik M. G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Long-term effects on depression and anxiety of an internet-based stepped care intervention for patients with cancer and symptoms of depression and anxiety: The U-CARE AdultCan trial2023In: Internet Interventions, ISSN 2214-7829, Vol. 32, article id 100625Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cancer is a serious disease that commonly causes significant psychological distress. The internet-based intervention (iCAN-DO), utilizing a stepped care approach for the treatment of anxiety and depression in individuals with cancer, has been shown to have favorable results for symptoms of depression at the primary endpoint, 10 months after randomization compared to standard care (SC). The aim of the present study was to evaluate the long-term effects of the intervention 18 and 24 months after randomization.

    METHODS: Patients with breast, colorectal, or prostate cancer and a score > 7 on either of the Hospital Anxiety and Depression Scale (HADS) subscales (n = 245) were recruited to the study in conjunction with a regular hospital visit. They were randomized to access to the stepwise iCAN-DO intervention for 24 months or to SC. Step 1 of the intervention comprised psycho-educative online material. In Step 2, internet-based cognitive-behavioral therapy with individual online support from a therapist was added. Step 2 was offered to those who reported persistent anxiety or depression symptoms (>7 on HADS), also at 1, 4, and/or 7 months after randomization. Missing data were imputed using the last rank carried forward method and used for the main analyses according to the intention-to-treat approach. Effects sizes (Cohen's d), and minimally clinically important difference (MCID) were calculated. Linear mixed models were used to analyze intervention effects over time.

    RESULTS: Symptoms of depression decreased significantly (p < 0.05) in the iCAN-DO group compared with the SC group from baseline to 18 months (d = 0.29), but not to 24 months (d = 0.27). Even though the average iCAN-DO group participant surpassed a MCID in symptoms of anxiety (>2 p) at both long-term follow-ups, the differences did not reach statistical significance, either at 18 months (p = 0.10) or 24 months (p = 0.09). Positive effects of iCAN-DO compared with the SC were also shown for some secondary HRQoL-outcomes; social functioning at 18 months (p = 0.02) and 24 months (p = 0.001), and sleep problems at 24 months (p = 0.01).

    CONCLUSION: A stepped-care internet-based intervention that has previously shown positive results for symptoms of depression at 10 months did show similar positive long-term effects also at 18 months. For symptoms of anxiety, no effect could be shown. The internet may provide an effective format for interventions to reduce symptoms of depression after cancer at patients' own choice of time, regardless of distance to a psycho-oncology clinic.

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  • 47.
    Igelström, Helena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Åsenlöf: Physiotheraphy. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Hauffman, Anna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Alfonsson, Sven
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Karolinska Inst, Dept Clin Neurosci, Stockholm, Sweden..
    Sjöström, Jonas
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division of Visual Information and Interaction.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    User Experiences of an Internet-Based Stepped-Care Intervention for Individuals With Cancer and Concurrent Symptoms of Anxiety or Depression (the U-CARE AdultCan Trial): Qualitative Study2020In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 22, no 5, article id e16604Article in journal (Refereed)
    Abstract [en]

    Background: The internet-based stepped-care intervention iCAN-DO, used in the multicenter randomized controlled trial AdultCan, was developed for adult patients undergoing treatment for cancer and concurrently experiencing anxiety or depressive symptoms. iCAN-DO aimed to decrease symptoms of anxiety or depression. Step 1 comprises access to a library with psychoeducational material and a peer-support section, as well as the possibility to pose questions to a nurse. Step 2 of the intervention offers treatment consisting of internet-based cognitive behavioral therapy (iCBT) to participants still experiencing anxiety or depression at 1, 4, or 7 months after inclusion.

    Objective: The study aimed to explore user experiences of delivery, design, and structure of iCAN-DO from the perspective of people with cancer.

    Methods: We studied user experiences by interviewing 15 informants individually: 10 women with breast cancer (67%), 4 men with prostate cancer (27%), and 1 man with colorectal cancer (7%) with a mean age 58.9 years (SD 8.9). The interviews focused on informants' perceptions of ease of use and of system design and structure. Informants had been included in iCAN-DO for at least 7 months. They were purposefully selected based on activity in Step 1, participation in iCBT (ie, Step 2), gender, and diagnosis.

    Results: Of the 15 informants, 6 had been offered iCBT (40%). All informants used the internet on a daily basis, but 2 (13%) described themselves as very inexperienced computer users. The analysis revealed three subthemes, concerning how user experiences were affected by disease-specific factors and side effects (User experience in the context of cancer), technical problems (Technical struggles require patience and troubleshooting), and the structure and design of iCAN-DO (Appealing and usable, but rather simple).

    Conclusions: The results indicate that user experiences were affected by informants' life situations, the technical aspects and the design of iCAN-DO, and informants' preferences. The results have generated some developments feasible to launch during the ongoing study, but if iCAN-DO is to be used beyond research interest, a greater level of tailoring of information, features, and design may be needed to improve user experiences. The use of recurrent questionnaires during the treatment period may highlight an individual's health, but also function as a motivator showing improvements over time.

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  • 48.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Cancerpatienten i primärvården2013In: Rehabilitering vid cancersjukdom: Att möta framtiden / [ed] Maria Hellbom & Bibbi Thomé, Stockholm: Natur och kultur, 2013, 1, p. 57-66Chapter in book (Other (popular science, discussion, etc.))
  • 49.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Stödfunktioner i vårdkedjan2006In: Rosa boken om bröstcancer: fysiska, psykiska, sociala och existentiella aspekter / [ed] Yvonne Brandberg & Peter Nygren, Stockholm: Cancerfonden , 2006, 1, p. 190-200Chapter in book (Other academic)
  • 50.
    Johansson, Birgitta
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Berglund, Gunilla
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology, Oncology.
    Holmberg, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences.
    Sjödén, Per-Olow
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Intensified primary cancer care: A randomised study on home care nurse contacts1999In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 30, no 5, p. 1137-1146Article in journal (Refereed)
    Abstract [en]

    Newly diagnosed cancer patients (n=527) were randomised to intensified primary care or a control group. Intensified primary care comprised routines to improve general practitioners' and home care nurses' possibilities to support and monitor patients, i.e. increased information from specialist care, education and supervision in cancer care. The aims of this paper are to evaluate the effects of intensified primary care on cancer patients' home care nurse contacts, and to study if patients' use of home care services 6 months after diagnosis can be predicted. The intervention resulted in a marked increase of follow-up contacts. About 90% of intensified primary care patients reported such contacts, compared to 26% of control patients. The results indicate that standard care does not routinely include follow-up contacts, not even for the oldest (80+ years) or those with advanced disease. Only 27% and 36% of these groups of control patients reported follow-ups. Logistic regression analysis identified intensified primary care as the strongest predictor for reporting a continuing contact 6 months after diagnosis. Intensified primary care patients were 14 times more likely than controls to report a such contact. The strongest predictor of a continuing contact in the intensified primary care group was high age. Patients with advanced disease were more likely than patients with non-advanced disease to report a continuing contact, and living in a rural district was positively associated with reporting a contact. A majority of the patients (70%) assessed the time for the first contact as the 'right time' and estimated that the nurse gave expected support to a very large or large extent (67%). The results suggest that routines like those implemented through intensified primary care may be an effective strategy to increase the accessibility and continuity of care, especially for elderly people and for patients with a need for long-term contacts.

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