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Background: As the survival proportions for rare cancers are on average worse than for common cancers, assessing the expected remaining life years in good health becomes highly relevant. This study aimed to estimate the healthy life expectancy (HLE) of a subset of rare and common cancer survivors, and to assess the determinants of poor perceived health in rare cancer survivors., Methods: To calculate HLE, survival data from the population-based Netherlands Cancer Registry of survivors of a rare cancer (i.e., ovarian cancer, thyroid cancer, Hodgkin lymphoma, non-Hodgkin lymphoma) (n=21,376) and a common cancer (i.e., colorectal cancer (CRC)) (n=76,949) were combined with quality of life (QoL) data from the PROFILES registry on a random sample of the rare (n=1025) and common cancer (n=2400) survivors. A flexible parametric relative survival model was used to estimate life expectancy (LE) and years of life lost, and multivariate logistic regression was applied to determine factors related to reported poor perceived health., Results: Patients previously diagnosed with a rare cancer had an average LE of 8-36 years and were expected to spend ≥67 % of their remaining life in good health. CRC survivors had an average LE of 10 years with approximately 65 % of their remaining life expected to spend in good health. For all cancer types, those aged ≥65 years or with stage IV had the lowest HLE. Low socioeconomic status, advanced stage, and having received radiotherapy only were important predictors of poor perceived health among rare cancer survivors., Conclusion: HLE can provide meaningful perspective for patients and practitioners for all cancer types, including rare cancers. Yet, data on QoL for rare cancers should be routinely collected, as such will serve as an indicator for monitoring and improving cancer care, and for enabling HLE measurements in cancer survivors., Competing Interests: Declaration of Competing Interest None., (Copyright © 2024. Published by Elsevier Ltd.)

Introduction: Advancements in the field of oncology are allowing patients to live longer, with enhanced quality of life (QoL). Accordingly, more patients with cancer are expressing the desire to return to work (RTW). Previous research has indicated that patients with a rare or advanced cancer can experience unique problems in the RTW process., Methods: This pilot study evaluated the outcomes and feasibility of the occupational care programme TERRA (i.e., recalibraTe lifE and woRk with and afteR cAncer) for patients with a rare or advanced cancer. Four rare cancer patients and 3 advanced cancer patients completed TERRA; a supportive occupational care programme consisting of five online group sessions over a two-month period. Pre- and post-intervention outcomes were collected using validated self-report questionnaires. The primary outcome was work ability. Secondary outcomes included QoL, anxiety and depression, fatigue, unmet needs, self-efficacy, readiness for RTW, work intention, work involvement, and work-life conflict. Feasibility was assessed using the RE-AIM model., Results: Changes in work ability scores were inconsistent across participants. Well-being outcomes generally improved following the intervention. Feasibility was evaluated positively by both participants and trainers., Conclusion: A multidisciplinary approach may further improve outcomes of occupational interventions supporting rare and advanced cancer patients. An effectiveness study to evaluate the outcomes and feasibility of the programme is deemed necessary., (© 2023 The Author(s). Published by S. Karger AG, Basel.)

Objective: Patients with a rare cancer (RC) often have a more complex disease trajectory than patients with a common cancer. Research involving both patient groups is needed to identify differences and resemblances. In this study, we aimed to explore and compare experiences, needs and quality of life of patients with rare and common cancer throughout the disease trajectory., Methods: A qualitative focus group study was conducted, including patients with rare and common cancer (n = 25). Participants were purposively selected to reflect heterogeneity of cancer types. A semi-structured topic list was used. Focus groups (n = 4) were recorded, transcribed verbatim and analysed, using thematic analysis., Results: Three themes were identified emphasizing care inequality between patients with rare and common cancer: (1) The solitary experience: lack of information and support impact the RC patient, (2) Sudden impact, but recognition reduces the common cancer burden, and (3) Absence of psychosocial care requires being empowered as a cancer patient., Conclusions: Patients with RC are faced with enormous challenges due to the high impact of their solitary experience on their quality of life, while patients with common cancer generally experience social support and recognition alleviating their burden. Centralisation of care for patients with RC is needed and tailored psychosocial care should be provided to overcome inequalities., (© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Objective: Patients with vaginal, vulvar, penile or anal cancer experience deteriorated psychosocial functioning and decreased Quality of Life (QoL). The aims of this study were to explore (1) the challenges and controversies patients experience in managing vaginal, vulvar, penile or anal cancer; their unmet needs; and how this affects their psychosocial functioning and (2) the gaps health care professionals (HCPs) experience in providing psychosocial support and potential improvements in care., Methods: Semi-structured interviews with patients with vaginal, vulvar, penile or anal cancer and with HCPs were conducted. All interviews were transcribed verbatim and thematically analysed., Results: Fourteen patients (86% female; mean age 55.5) and 12 HCPs (75% female; mean age 46.4) participated. Four themes were identified: (1) recognisable symptoms but unfamiliar diagnosis, (2) 'double hit' has severe impact on psychosocial functioning, (3) personal and tailored information is important but not guaranteed and (4) all-encompassing care to improve psychosocial functioning and QoL., Conclusion: Patients with vaginal, vulvar, penile or anal cancer encounter a lack of awareness and knowledge about their rare cancer type, difficulties regarding communication and long-term changes in body image and sexuality. Awareness of symptoms should be raised and psychosocial care should be offered on a structural basis., (© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

Background: Most cancer survivors are able to return to work at some point after diagnosis. However, literature on sustained employability and health-related quality of life (HRQoL) is limited. Therefore, the aims of this study were to explore the influence of change in employment status on HRQoL in cancer survivors long term after diagnosis, and to identify predictors of work continuation in occupationally active survivors., Material and Methods: We used prospective data (T0 = two years after diagnosis, T1 = one-year follow-up, and T2 = two-year follow-up) from a cohort of cancer survivors that had an employment contract and were of working age at T0 (N = 252, 69.8% female). Groups were formed on the basis of change in employment status: 'continuously not working' (19.8%), 'positive change in employment status' (5.6%), 'negative change in employment status' (14.7%), and 'continuously working' (59.9%). ANCOVA was used to explore the relationship between change in employment status and HRQoL at T1. Generalized estimating equations (GEE) were used to identify predictors of work continuation (at T1 and T2) in survivors that were occupationally active at T0 (N = 212)., Results: 'Continuously working' survivors scored significantly better on the EORTC QLQ-C30 scales: role functioning, fatigue, pain, constipation, global health/QoL and the Summary score, than 'continuously not working' survivors, and better on physical, role and emotional functioning, fatigue, financial impact, global health/QoL and the Summary score than survivors with a 'negative change in employment status' (effect size range = 0.49-0.74). In occupationally active survivors, a high score on current work ability was associated with work continuation one year later [odds ratio (OR) 1.46; 95% CI 1.11-1.92]., Conclusion: Cancer survivors 'continuously working' function better and have a better health and QoL than those who are not able to work. However, in occupationally active cancer survivors, one should monitor those with low self-perceived work ability, because they have an increased risk to discontinue their work.

Objective: To evaluate the effect of behavioral techniques and physical exercise on psychosocial functioning and health-related quality of life (HRQoL) outcomes in breast cancer patients and survivors., Methods: A meta-analysis was carried out to quantify the effects of behavioral and exercise interventions on fatigue, depression, anxiety, body-image, stress and HRQoL. Summary effect sizes and standard errors were calculated. The presence of publication bias was explored and sensitivity analyses were performed to identify possible sources of heterogeneity., Results: In total, 56 studies were included. Statistically significant results were found for the effect of behavioral techniques on fatigue (ES -0.158; 95% CI -0.233 to -0.082, p<0.001), depression (ES -0.336; 95% CI -0.482 to -0.190, p<0.001), anxiety (ES -0.346; 95% CI -0.538 to -0.154, p<0.001) and stress (ES -0.159; 95% CI -0.310 to -0.009, p=0.038). For the effect of physical exercise interventions, statistically significant results were found on fatigue (ES -0.315; 95% CI -0.532 to -0.098, p=0.004), depression (ES -0.262; 95% CI -0.476 to -0.049, p=0.016), body-image (ES 0.280; 95% CI 0.077 to 0.482, p=0.007) and HRQoL (ES 0.298; 95% CI 0.117 to 0.479, p=0.001)., Conclusions: The results indicate that behavioral techniques and physical exercise improve psychosocial functioning and HRQoL in breast cancer patients and survivors. Future research is needed on the effect of physical exercise on stress and the effect of the combined intervention in breast cancer patients., (Copyright © 2010 John Wiley & Sons, Ltd.)

An introduction to articles published within the issue is presented, including a study on the unmet supportive care needs of rare cancer patients, another on a multimodal interdisciplinary rehabilitation program (HAPPY) that was developed specifically for patients treated with non-myeloablative allogeneic haematopoietic stem cell transplantation (NMA-HSCT), and one on the experiences of hematological cancer patients and experts regarding return to work (RTW) and participation at work.

Simple Summary: Psychological resilience is an important psychological mechanism that enables a person to successfully handle significant adversities, e.g., a cancer diagnosis. Despite improved prognosis, breast cancer is associated with emotional distress across the trajectory of the disease. This study aimed to investigate psychological resilience and health-related quality of life in Swedish women with breast cancer at diagnosis and one year later. The resilience score declined in the cohort and was associated with health-related quality of life at both time points. Assessment of psychological resilience in breast cancer care might enable the identification of patients in need of intensified rehabilitation to improve their health-related quality of life. Psychological resilience is considered a major protective psychological mechanism that enables a person to successfully handle significant adversities, e.g., a cancer diagnosis. Higher levels of resilience have been associated with higher levels of health-related quality of life (HRQoL) in breast cancer (BC) patients, but research examining the longitudinal process of resilience is limited. The aim of this population-based longitudinal study was to investigate resilience and HRQoL from diagnosis to one year later in 418 Swedish women with primary BC. Resilience was measured with the Connor–Davidson Resilience Scale 25, and HRQoL was measured with the Short Form Health Survey. The participants responded to questions regarding demographic and study-specific variables. Clinicopathological variables were collected from the Swedish National Quality Register for Breast Cancer. The mean score for resilience was 70.6 (standard deviation, SD = 13.0) at diagnosis and 68.9 (SD = 14.0) one year later, p < 0.001. The level of trust in the treatment and financial situation demonstrated the greatest association with the change in resilience levels. No oncological treatment modality was associated with a change in resilience levels. HRQoL decreased over time in the cohort. Resilience was positively associated with HRQoL at one year post diagnosis, which demonstrates that resilience is an important factor in maintaining HRQoL. [ABSTRACT FROM AUTHOR]

Our purpose was to investigate the possible mediating role of active coping and passive coping between self‐reported health complaints and functional limitations, as assessed by an insurance physician (IP), self‐assessed work ability and work status in cancer survivors on long‐term sick leave. Validated questionnaires were used for self‐reported health complaints, work ability and work status. The functional limitations of the respondents were transformed into scales for mental and physical limitations and limitations in working hours. Using LISREL, we constructed a model with coping in a mediating role. Active coping mediated between fewer self‐reported physical limitations, more depressive symptoms, better cognitive functioning and more fatigue on the one hand, and more physical limitations and limitations in working hours on the other hand. Passive coping played no mediating role and was associated with more self‐reported depressive symptoms only. More functional limitations were associated with lower self‐assessed work ability of cancer survivors, and with not being at work, whereas higher self‐assessed work ability was associated with being at work. Regarding the role of active and passive coping strategies in cancer survivors on long‐term sick leave, more longitudinal research is needed to confirm causality. [ABSTRACT FROM AUTHOR]