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Objective: Providing current, evidence-based information to cancer survivors is critical for informed decision making. People diagnosed with a rare cancer report higher unmet information needs compared to common cancer survivors. However, interventions providing informational support for rare cancers are limited. Therefore, the aims of this systematic review were to identify and synthesise interventions decreasing survivors' information needs and/or improving satisfaction with information, and to explore potential components to be included in an intervention for rare cancer survivors., Methods: Searches were conducted in PubMed, CINAHL, Embase, PsycINFO and the Cochrane Library. Studies reporting an intervention targeting information needs and/or patient satisfaction with information in survivors of any cancer type were included. Data were extracted, a quality assessment performed and findings were synthesised., Results: A total of 7012 studies were identified and 34 were included in the review. Five studies targeted patients with a rare cancer type; the remaining studies included common cancer survivors. Interventions varied in relation to the mode of information provision, timing of intervention delivery, and the intervention provider. The most promising interventions included face-to-face communication and written material and were delivered by a nurse. All rare cancer studies were designed around a web-based program, but none of them improved outcomes., Conclusions: Interventions targeting information needs and/or patient satisfaction with information in rare cancer survivors are lacking. Future studies should focus on this underserved group, and successful aspects of interventions for common cancer survivors should be considered for inclusion when designing an intervention for rare cancer survivors., (© 2024. The Author(s).)

Background: Approximately onethird of cancer survivors encounter challenges reintegrating into the workforce, often experiencing involuntary unemployment and/or partial or full work disability following diagnosis and treatment. Returning to paid employment presents evident challenges due to uncertainties regarding work ability, perceived employer discrimination, and a lack of support, thereby risking social exclusion. However, interventions addressing return to paid employment among unemployed and/or work-disabled cancer survivors are scarce. Here, we describe the protocol of a randomized controlled trial (RCT), including a process and economic evaluation, evaluating the effectiveness and cost-effectiveness of the PLACES (unemPLoyed cAnCEr survivors Support) intervention aimed at supporting unemployed and/or work-disabled cancer survivors returning to paid employment., Methods: A two-armed RCT with a 12-month follow-up period will be conducted. Eligible participants: (1) are of working age (18-65 years), (2) are diagnosed with cancer between 6 months and 10 years ago, (3) are unemployed and/or partially or fully work-disabled, (4) have completed cancer treatment, and (5) are seeking paid employment and are motivated to initiate work immediately. Participants will primarily be identified through the Dutch Social Security Agency and the Netherlands Cancer Registry and recruited via healthcare professionals. Participants randomly allocated to the intervention group (n = 82) will receive the PLACES intervention: a tailored supported employment intervention based on the principles of Individual Placement and Support (IPS). This includes support in seeking, returning to, and maintaining paid employment. Participants allocated to the control group (n = 82) will receive care as usual. All participants will be asked to complete questionnaires, at baseline (T0), and after 3 (T1), 6 (T2), and 12 (T3) months of follow-up. The primary outcome is paid employment [yes/no]. Secondary outcomes are time until paid employment, change in working hours, work ability, quality of (working) life, and self-efficacy regarding return to work. Additionally, process and economic evaluations will be conducted., Discussion: We hypothesize that the PLACES intervention will be effective in obtaining paid employment, enhancing work ability, and improving quality of life. In addition, we expect the intervention to be cost-effective. If proven effective and cost-effective, actions should be taken to implement the intervention in usual care., Trial Registration: NCT06028048., (© 2024. The Author(s).)

Purpose: Financial toxicity, the subjective distress caused by objective financial burden, significantly impacts cancer survivors. Yet, enduring effects on survivors remain unclear. Therefore, we investigated the experienced objective financial burden and subjective financial distress in long-term cancer survivors., Methods: A cross-sectional nationwide online survey of adult cancer survivors ≥ 5y after diagnosis were analyzed. Objective financial burden was measured via extra expenses and income loss, while subjective financial distress covered psychological well-being, coping and support-seeking behavior, and financial concerns. Groups were compared (i.e., having cancer vs. former patients) by t-tests and chi-squared tests. Financial toxicity was visualized with Sankey plots and sunburst diagrams., Results: 4,675 respondents completed the survey, of whom 2,391 (51%) were ≥ 5y after their cancer diagnosis. Among them, 75% experienced income loss and/or extra expenses after diagnosis. One-third of the previously employed respondents relied on work disability benefits. Further, 'being unable to make ends meet' increased from 2% before diagnosis to 13% ≥ 5y after diagnosis (p < .001). Additionally, 58% reported negative psychological impacts of financial toxicity, and 47% worried about their financial future., Conclusions: Cancer survivors often face income loss and additional expenses, leading to ongoing financial difficulties that affect their psychological well-being. Despite this significant impact, there is a lack of guidance and support to help them manage these financial challenges. These findings highlight the need for healthcare professionals to recognize and address the financial challenges., Implications for Cancer Survivors: This study underscores the widespread financial challenges cancer survivors encounter, emphasizing the need for ongoing financial support and comprehensive assessments of their physical and psychological well-being., (© 2024. The Author(s).)

Objective: Due to new treatment options, survival rates in multiple myeloma (MM) are improving. Consequently, maintaining work and income is becoming more important for patients and society. Therefore, we aimed to explore the change in income and employment in patients with MM., Methods: Data from the Netherlands Cancer Registry of MM patients diagnosed between 2012 and 2017 were merged with socioeconomic data from Statistics Netherlands. Descriptive statistics were used to analyse total income, income from employment, and accumulated income before and after diagnosis., Results: Income from employment decreased by 45% in MM patients, between 1 year before and 4 years after diagnosis Four years after diagnosis, 35% of the patients were still employed, with an accumulated 5-year productivity loss of €121 million. Higher income loss from employment and job loss was observed in female patients, patients with more extensive disease, or those not treated with autologous stem cell transplant., Conclusion: Loss of (income from) employment among patients with MM was high, causing financial burden on the patient and society. With improving survival in MM, more research and awareness are needed to better assess the importance of income and work for MM patients and society., Competing Interests: Disclosure PS: Received Research grants from Amgen, Celgene, Janssen, Skyline Dx. Honoraria from Amgen, Celgene, Janssen, Karyopharm, Seagen, Skyline Dx. HB Reports consulting or advisory role for Pfizer (paid to institute) and research funding from BMS-Celgene (paid to institute). CB, MB, HS, SD: None., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Purpose: To explore experiences of unemployed and/or work-disabled cancer survivors who have pursued to return to paid employment., Methods: Four digital focus group interviews were conducted with 16 cancer survivors (< 10 years post-diagnosis) who have pursued to return to work within the last 2 years. Interview topics included motivations, facilitators of and barriers to job seeking, and returning to and maintaining paid employment. Interview audio recordings were transcribed verbatim and analyzed using conventional content analyses., Results: Participants were mostly female (94%), and the majority had successfully returned to paid employment (56%). Both intrinsic factors (e.g., sense of purpose, social interactions) and extrinsic factors (e.g., financial necessity) motivated their return to paid employment. During job seeking, participants experienced facilitators including support, personal qualities (e.g., life experience), and trial workplaces. Barriers included inadequate support, perceived employer discrimination, and work ability uncertainty. Returning to and maintaining employment was facilitated by flexible work, supportive colleagues, and intrinsic drive, while barriers included side effects (e.g., fatigue) and overly demanding work., Conclusions: Unemployed and/or work-disabled cancer survivors are generally motivated to return to paid employment by both intrinsic and extrinsic factors, but uncertainty about their ability and inadequate support may hinder this. These findings highlight the need for trial workplaces, support during every phase of return to paid employment, and a flexible, supportive workplace., Implications for Cancer Survivors: Tailored interventions addressing the needs identified in this study are urgently needed. The recommendations provided offer strategies for various stakeholders to enhance support for unemployed and work-disabled cancer survivors., (© 2024. The Author(s).)

Purpose: To assess cognitive functioning in occupationally active non-central nervous system cancer survivors with cognitive complaints using neuropsychological tests, and to investigate the association between (1) formally assessed cognitive functioning and self-reported work-related outcomes and (2) self-reported cognitive functioning at work and self-reported work-related outcomes., Methods: Baseline data of a multicenter, randomized controlled trial (n = 279) were used. Associations between neuropsychological test performance (Amsterdam Cognition Scan) and self-reported cognitive functioning (Cognitive Symptom Checklist-work) with work ability (Work Ability Index) and work functioning (Work Role Functioning Questionnaire) were examined using multivariate linear regression., Results: Thirty percent of cancer survivors had lower than expected performance on neuropsychological tests. Higher overall neuropsychological test performance was associated with better work ability (Cohen's f 2  = 0.014) and physical functioning at work (Cohen's f 2  = 0.13). Furthermore, higher motor performance was associated with better work ability (Cohen's f 2  = 0.018). In addition, self-reported work-related cognitive complaints were associated with self-reported work-related outcomes (Cohen's f 2  = 0.13-0.35)., Conclusions: The percentage of cancer survivors with lower than expected performance on neuropsychological tests exceeded the percentage expected in a normal population. This neuropsychological test performance was weakly associated with various aspects of work ability and work functioning. Stronger associations were found between self-reported cognitive functioning at work with self-reported work-related outcomes., Implications for Cancer Survivors: A cognitive rehabilitation approach that specifically aims at reducing cognitive symptoms at work could be a valuable part of interventions that aim to improve work-related outcomes. Trial registration The study is registered at ClinicalTrials.gov (NCT03900806) at 03 April 2019 (current status: ongoing), https://clinicaltrials.gov/ct2/show/NCT03900806?term=NCT03900806&draw=2&rank=1., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Purpose: Patients with a rare cancer face challenges, e.g., delayed diagnosis, that may affect trust in the healthcare system and the healthcare professionals (HCPs) involved. This study aimed to explore trust of patients with a rare cancer in their HCPs and the healthcare system., Methods: Semi-structured interviews were conducted with 20 purposively sampled patients with a rare cancer. The interview guide included topics related to trust, including level, development, barriers and facilitators, importance, and trust dimensions. Thematic analysis was conducted with use of Atlas.ti., Results: The mean age of patients was 50 years, 60% were female, and 70% were highly educated. Three themes were constructed: (1) "Confirmed expertise is a prerequisite of trust." Patients need confirmation of their HCPs' expertise, as it could not be assumed due to the rarity of their cancer; (2) "Trust depends on the adequacy of information and how it is provided." Limited information about rare cancer reduced patients' trust in health care, whereas interpersonal trust was mainly affected by how HCPs provided information; and (3) "Trust is built on properly coordinated and supportive care." Proper organization and cooperation within and between hospitals, and integration of supportive care, enhanced trust., Conclusion: Patients with a rare cancer experience challenges that influence trust in HCPs and the healthcare system. Further research should examine trust among subgroups of patients with a rare cancer, to enable development of tailored interventions., Implications for Cancer Survivors: HCPs may improve trust by focusing on expertise, effective information provision, proper coordination of care, and provision of adequate supportive care., (© 2024. The Author(s).)

Background: Cognitive problems contribute to decline in work performance. We evaluated (1) the effectiveness of basic self-management and extensive therapist-guided online cognitive rehabilitation on attainment of individually predetermined work-related goals among occupationally active cancer survivors, and (2) whether effectiveness of the programs differed for survivors with and without formal cognitive impairment., Methods: In a 3-arm randomized controlled trial (NCT03900806), 279 non-central nervous system cancer survivors with cognitive complaints were assigned to the basic program (n = 93), the extensive program (n = 93), or a waiting-list control group (n = 93). Participants completed measurements pre-randomization (T0), 12 weeks post-randomization upon program completion (T1), and 26 weeks post-randomization (T2). Mixed-effects modeling was used to compare intervention groups with the control group on goal attainment, and on self-perceived cognitive problems, work ability, and health-related quality of life., Results: Participants in the extensive program achieved their predetermined goals better than those in the control group, at short- and long-term follow-up (effect size [ES] = .49; P < .001; ES = .34; P = .014). They also had fewer recovery needs after work (ES = -.21; P = .011), more vitality (ES = .20; P = .018), and better physical role functioning (ES = .0.43 P = .015) than controls. At long-term follow-up, this finding persisted for physical role functioning (ES = .42; P = .034). The basic program elicited a small positive nonsignificant short-term (not long-term) effect on goal attainment for those with adequate adherence (ES = .28, P = .053). Effectiveness of the programs did not differ for patients with or without cognitive impairment., Conclusions: Internet-based therapist-guided extensive cognitive rehabilitation improves work-related goal attainment. Considering the prevalence of cognitive problems in survivors, it is desirable to implement this program., (© The Author(s) 2024. Published by Oxford University Press.)

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.)