Yvonne Wengström

Purpose: Live-remote supervised exercise helps cancer survivors reduce the negative side effects of their treatment, and group dynamics are an integral aspect of successful rehabilitation outcomes. In this international group concept mapping study, we investigated which aspects of peer interaction and trainer behaviour participants consider important and how feasible those preferences are according to exercise professionals. Methods: Participants who completed a 12-week live-remote exercise programme for cancer survivors were recruited in 5 European countries and Australia. Participants generated statements in response to prompts about patient interaction and trainer behaviour. The next group of participants sorted statements into thematically similar clusters and/or rated them by perceived importance. Exercise specialists rated the same statements according to feasibility. Data were analysed using multidimensional scaling, hierarchical cluster analysis, and qualitative interpretative analysis. Results: A total of 120 participants and 14 exercise specialists participated. The patient interaction prompt generated 45 statements organized into five clusters (mean importance rating 3.29; mean feasibility 3.61). The subjective experience of belonging to the group was the highest rated cluster for this prompt. The trainer behaviour prompt generated 56 unique statements organized into seven clusters (mean importance 3.82; mean feasibility 4.13). High-quality individual and group level instructions were rated as most important for this prompt. Conclusions: Participants and trainers agreed on the relative priorities, and all key aspects were rated as feasible, suggesting favourable conditions for implementation. Adequate instruction and supervision by trainers and a warm, welcoming atmosphere among participants were considered the most important aspects of live-remote training.

Background: The Lymphedema Functioning, Disability, and Health Upper Limb (Lymph-ICF-UL) questionnaire is an internationally recognized instrument for assessing patient-reported functional and activity limitations associated with arm lymphedema following breast cancer surgery. This study aimed to validate the Swedish version of the Lymph-ICF-UL and, additionally, to examine its applicability in an extended cohort without diagnosed arm lymphedema but with potential arm-related impairments following axillary surgery for breast cancer. Methods: A cross-cultural psychometric validation was conducted among 27 Swedish-speaking women aged 44–86 years who had undergone node-positive breast cancer surgery 1 year earlier. Data were collected between October 2024 and March 2025. The questionnaire was back-translated into English, revised, and tested for reliability using a test–retest methodology and assessment of internal consistency. Validity was assessed through construct, face, and content validity. Results: Back-translation required minor grammatical adjustments. Test–retest analysis demonstrated good reproducibility, with intraclass correlation coefficients exceeding 0.80 across all domains. Internal consistency was satisfactory, with Cronbach’s alpha ranging from 0.76 to 0.96. Construct validity was moderate, with 70.0% of predefined hypotheses for convergent and divergent validity confirmed. Face and content validity analyses led to clarification of the questionnaire instructions. Overall, the items were considered relevant and adequately comprehensive for assessing perceived impairments. Conclusions: The Swedish version of the Lymph-ICF-UL questionnaire is a reliable and valid instrument for assessing arm impairment following axillary surgery for node-positive breast cancer, including among individuals without confirmed arm lymphedema.

In recent years, remote exercise services (“telerehabilitation”) have been increasingly explored and implemented, including in supportive cancer care, on the promise of greater convenience, access independent of geographic location, reduced infection risk, and cost savings. Ethical commentary on telehealth in general is substantial, but sustained discussion of questions specific to telerehabilitation remains comparatively sparse. As contributors to PREFERBALE-II, a European Union–funded project evaluating live-remote exercise for people recovering from cancer treatment, we sought practical guidance on how to deliver such services responsibly, and found little to work with. This prompted this viewpoint, which sets out our own position as researchers and clinicians engaged in this work. We draw on a purposive sample of professional guidance documents, which were assembled through our professional networks and a supplementary web search, and on a narrative reading of qualitative studies chosen to represent accounts of benefits as well as burdens. We read these documents through an analytical lens of responsible innovation. We make 3 arguments. First, the ethical content of current telerehabilitation guidance is largely confined to the products and processes of innovation, covering safety, privacy, consent, and compliance, while the question of purpose, that is, whether, for whom, and why remote rehabilitation should be offered at all, is left largely unasked. Anticipation appears only implicitly, and reflexivity, inclusion, and responsiveness barely at all. Responsibility is repeatedly delegated to individual professionals without commensurate structural support. Second, the situated experience of users and professionals forms part of the ethics of telerehabilitation and is not merely data to be assessed. Reported benefits and burdens depend on social context, including age, digital literacy, connectivity, caregiver availability, language, and sensory or cognitive impairment, so an equity claim made for the modality in general may not hold for the individual patient. Third, the ethics of telerehabilitation consequently has to be institutionalized across 3 overlapping domains: the interpersonal and experiential quality of remote care, the legal and institutional conditions of delivery, and the positioning of telerehabilitation within health systems. We address these arguments primarily to rehabilitation professionals and the associations and standard-setting bodies that issue guidance for them, and secondarily to digital health and ethical, legal, and social implications researchers, policymakers, and health-system decision-makers who commission or implement such services. We offer an agenda for a broader ethics conversation across professional societies, curricula, and affected publics, together with observations from a consortium put forward as hypotheses for study.

Objectives: This study aims to improve understanding physical activity behaviour in patients with metastatic breast cancer, based broadly on Ajzen's Theory of Planned Behaviour (TPB). We assessed the role of different pathways in the TPB and of cancer specific barriers to find points of leverage for improving exercise support and behaviour in this vulnerable population. In addition, we explored international differences in the model's pathways. Methods: We conducted an international survey ( n = 420) amongst patients with metastatic breast cancer, including items assessing attitude, injunctive subjective norm, intention, perceived behavioural control (PBC), and self‐reported physical activity. Additionally, we examined the relative importance of health‐related barriers on motivational pathways. Results: Model fit indices indicated a reasonable fit for the TPB (cfi = 0.98, rmsea = 0.08) with small (standardized absolute coefficients 0.13–0.30) but statistically significant associations in the expected directions according to the theoretical model, except for subjective norm ( β = 0.05). The interaction of PBC with intention was statistically significant, but adding this term diminished overall model fit (cfi = 0.85, rmsea = 0.13). The presence of health‐related barriers impacted behaviour ( β = −0.19) whilst acting as a mediator for PBC on intention. International differences in the strength of model pathways suggest cultural variation. Conclusions: Findings support the applicability of the TPB for understanding and supporting physical activity behaviour in patients with MBC. Targeting perceived behavioural control may be especially effective in overcoming health‐related barriers in this population. Additionally, improving affective and instrumental attitude towards physical activity could enhance intervention outcomes.

Purpose: The study aimed to describe patients’ experiences of physical, psychological, social, and existential symptoms and challenges during the first year after allogeneic haematopoietic cell transplantation (allo-HCT). Methods: Quantitative and qualitative data were collected and analysed with descriptive methods as part of a large retrospective cross-sectional online survey of patients who underwent allo-HCT between 2017 and 2020. Results: In total, 126 (59.7%) of all eligible patients participated, mean age 57 years (range 21–75), equal distribution of gender and time after allo-HCT. Most patients (58%) had experienced fewer than 5 coexisting symptoms, although 8% reported more than 10. Physical symptoms or challenges (83.0%) were most often reported, followed by social (52%), existential (50%), and psychological (43%), as described in responses to open-ended questions. Analysed descriptions resulted in 12 categories/areas of physical symptoms and challenges; two categories each of psychological— My inner self and Me in my context ; social— Social isolation and Impact on relationships ; and existential symptoms and challenges —Re-evaluating life and myself and An uncertain future . Conclusion: Patients experienced a variety of symptoms and challenges as a multidimensional experience during the first year after allo-HCT. A holistic approach to symptoms and challenges is needed to address individual patients’ situations. This knowledge emphasises the importance of patients receiving supportive care to navigate life after transplantation and into survivorship.

Extensively updated in light of the UK Medical Research Council’s (MRC) latest guidance on complex intervention research methods in health and social care, this

Whilst the first section of this book, that of developing the complex intervention, in essence, was about assembling all the relevant current knowledge, theoretically and in practice, to develop a tentative model of the intervention and its expected outcomes, the next section was about how to test the assumptions related to the intervention and its outcomes, taking context into account. This is to identify weaknesses and find out how to amend them. Identifying these uncertainties requires synthesising knowledge, that is, a process of integrating information from various sources to create a new coherent understanding of the entire process, theoretically and as applied, the intervention and its outcomes (Whittemore et al., 2014), and testing them. The assumptions behind this tentative model need to be scrutinised for their strengths and weaknesses to identify uncertainties and explore them in-depth. The previous section addressed such uncertainties and approached feasibility issues from different angles: methodologically, procedural, the intervention as such, progression, and sampling as well as study size. As perhaps noted by now, this edition of the book takes it for granted that a combination of qualitative and quantitative methods is relevant throughout, depending on the uncertainty that needs to be addressed in-depth. Synthesising knowledge developed through different research methods is a challenge, but also an opportunity to deepen the understanding of the intervention, its mechanisms and impact on the organisation, and its outcomes as related to the context.

Purpose: As survival of patients with metastatic breast cancer (MBC) improves, their work situation is gaining importance. The aim of the current study was to identify factors associated with work status and quality of working life (QWL) in patients with MBC. Additionally, we investigated the effects of an exercise intervention on work status. Methods: Within the multinational PREFERABLE‐EFFECT exercise trial, 287 patients with MBC of working age (18–65 years) reported on their working situation over 9 months as a secondary endpoint. Among a subgroup of participants, QWL was assessed by the Quality of Working Life Questionnaire for Cancer Survivors (QWLQ‐CS) ( N = 59). Results: At baseline, 157 (54.7%) participants were employed, of whom one‐third reported having recently reduced their amount of work because of fatigue (41.7%), cognitive problems (33.3%), or inability to meet work demands (33.3%). Participants wished for more flexible working hours (29.2%) and less productivity pressure (37.5%). Participants were less likely to work if they experienced higher levels of pain ( p = 0.014). Among working participants, an academic education and higher levels of psychological distress were associated with a higher number of working hours (all p < 0.05). Fatigue, an academic education, and performing mentally strenuous tasks at work were negatively associated with QWL (all p < 0.05). The exercise intervention did not affect the number of hours worked during the study. Conclusions: Symptom management might be important for patients' ability to work. To help patients stay employed and improve QWL, employers should consider offering more flexible work arrangements and adapting to their employees' changing needs and abilities. Trial Registration: The PREFERABLE‐EFFECT trial was registered with ClinicalTrials.gov on October 9, 2019 (NCT04120298).

The understanding and treatment of sexual health problems, impaired body image, and other non‐life threatening but burdensome symptoms of women with metastatic breast cancer (mBC) is still insufficient. We studied the factors associated with such symptoms and investigated whether these problems could be alleviated by a structured exercise intervention. In the multinational PREFERABLE‐EFFECT study, 355 women with mBC were randomly assigned to usual care (n = 178) or a 9‐month supervised exercise program (n = 177). Breast cancer‐specific functions and symptoms (EORTC QLQ‐BR42) were assessed at baseline, 3, 6 (primary timepoint), and 9 months. Linear regression models and linear mixed models for repeated measures were calculated. At baseline, participants were 55.4 ± 11.2 years old, 52.4% were undergoing endocrine therapy, and 25.4% chemotherapy. Baseline sexual functioning was low, with 94.3% reporting no or little sexual activity. Age and depressive symptoms were negatively associated with sexual functioning. Among sexually active women, 46.2% felt no or little sexual enjoyment and 37.3% suffered from vaginal dryness. Body image was reported as low by 23.7%. Exercise significantly improved sexual functioning (6‐months between‐group difference (BGD) = 5.6, 95% CI [1.9, 9.4], effect size (ES) = 0.28) and vaginal symptoms (BGD = −7.1 [−11.7, −2.5], ES = 0.25), compared to usual care. Effects on body image were marginal (BGD = 4.0 [−0.2, 8.3], ES = 0.14). Among participants undergoing chemotherapy (n = 90), exercise reduced chemotherapy side‐effects (BGD = −8.2 [−15.4, −1.0], ES = 0.48). In conclusion, women with mBC often experience sexual and vaginal problems and other treatment‐related side‐effects. A 9‐month supervised exercise program vs. control was effective in improving sexual functioning and vaginal symptoms among women with mBC.

Background: Monitoring metabolites of tamoxifen, such as endoxifen, has been suggested as a strategy to ascertain therapeutic effect of tamoxifen therapy, but clinical guidelines are missing. Herein, we aim to investigate the outcome of endoxifen concentrations of low-dose tamoxifen, using change in mammographic breast density as a proxy for therapy response. Methods: In the randomized KARISMA-Tam (Karolinska Mammography project for risk prediction of breast cancer -Intervention Study with Tamoxifen) trial, including 5 doses of tamoxifen, measurements of plasma endoxifen concentrations, determination of CYP2D6 metabolizer status, and mammographic breast density change over the trial period were carried out. Association between endoxifen concentrations and relative mammographic breast density change after 6 months treatment was analyzed using linear regression in a spline model. Results: A total of 824 women (335 premenopausal, 489 postmenopausal) were included. In analyses of premenopausal women, a spline model described a mammographic breast density decrease, equivalent to the mean (−18.5%) seen in women exposed to 20 mg tamoxifen, at endoxifen concentrations of 2-3 ng/mL. The mammographic breast density decrease reached a nadir at endoxifen levels of 3 ng/mL and did not decrease further at higher endoxifen concentrations. Most intermediate and normal tamoxifen metabolizers (about 90% of all participants) reached an endoxifen concentration of more than 2 ng/mL at tamoxifen doses of 5 and 10 mg. No mammographic breast density decrease was seen in the postmenopausal group. Conclusions: We have identified a possible window of effect on mammographic breast density at endoxifen concentrations of 2-3 ng/mL in premenopausal women, which corresponds to the doses of 5 and 10 mg tamoxifen. Because mammographic breast density change was used as a surrogate marker for therapy response, results should be confirmed using clinically established outcomes measures.