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Purpose: Patients with rare cancer often experience diagnostic delays and limited treatment options, potentially negatively impacting their working lives. We explored whether those with rare vs. common cancer have an increased risk of loss of contractual employment (1) up to 2 years pre-diagnosis, (2) up to 5 years post-diagnosis, and (3) which characteristics of rare cancer survivors are associated with loss of contractual employment 5 years post-diagnosis., Methods: Data from the Netherlands Cancer Registry and Statistics Netherlands were linked. Demographic, work-related, and cancer-related characteristics were obtained of 16,203 patients with rare cancer and 23,295 unmatched patients with common breast or colorectal cancer. Transitions in primary source of income were explored from contractual employment to work disability, unemployment, social welfare, (early) retirement, or self-employment. Logistic regression and competing risk survival analyses were applied., Results: Employees with rare vs. common cancer had increased odds of becoming work-disabled pre-diagnosis (OR = 1.83, 95%CI 1.30-2.58) and of becoming self-employed post-diagnosis (HR = 1.32, 95%CI 1.03-1.68). Younger age and having a temporary employment contract were associated with becoming self-employed among those with rare cancers., Conclusions: Employees with rare vs. common cancer have an increased risk of loss of contractual employment pre- and post-diagnosis., Implications for Cancer Survivors: To reduce the risk of adverse work outcomes pre- and post-diagnosis, awareness and knowledge of rare cancers need to be increased to shorten time to diagnosis and accelerate access to adequate care., Competing Interests: Declarations. Ethics approval: As this was a registry study, no informed consent was required. We acted in accordance with the guidelines of Statistics Netherlands and the Netherlands Comprehensive Cancer Organisation. Conflict of interest: The authors declare no competing interests., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

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.)

Purpose: Many patients with a malignant (i.e., grade II-IV) glioma are of working age, yet they are rarely included in "cancer and work" studies. Here, we explored (1) the work-related experiences and unmet needs of patients with a malignant glioma and (2) the experiences and needs of relevant healthcare and occupational (health) professionals ("professionals") in providing work-related support to this patient group., Methods: Individual semi-structured interviews were held with patients with a malignant glioma who were of working age and had an employment contract at diagnosis, and relevant professionals. Interviews were transcribed verbatim and analysed thematically., Results: Patients (n = 22) were on average 46 ± 13 years of age (64% male) and diagnosed with a grade II (n = 12), III (n = 4), or IV glioma (n = 6). Professionals (n = 16) had on average 15 ± 9 years of relevant work experience with the patient group. Four themes emerged from the data: (1) having a malignant glioma: experienced consequences on work ability, (2) communicating about the consequences of a malignant glioma at work, (3) distilling the right approach: generic or tailored work-related support, and (4) accessibility of work-related support., Conclusions: Glioma-specific consequences on patients' work ability necessitate better communication between, and tailored guidance for, patients, relevant professionals, and the workplace. Suggestions for improvement, e.g., the periodic use of comprehensive neuropsychological assessments, are provided in the article., Implications for Cancer Survivors: Patients with a malignant glioma would benefit from tailored and proactive outreach about work-related issues bv relevant professionals., (© 2023. The Author(s).)

Purpose: Interventions to support work participation in cancer survivors (CSs) have shown limited effectiveness. Applying a behavioral change framework (e.g., stages of change) could make work participation interventions for CSs more timely and tailored. We aimed to explore the application of the stages of change framework to work participation support for CSs and to generate stage-specific intervention content., Methods: Eighteen experts (e.g., occupational physicians, reintegration consultants) were individually interviewed, and three focus groups with CSs (n = 6, n = 5, n = 4) were conducted. Data were analyzed along the six work-related behavioral change stages purported by the readiness for return to work framework, which is based on the stages of change., Results: The following themes were identified: (1) pre-contemplation: emotional support and staying connected-encourage contact with the employer/colleagues; (2) contemplation: considering return to work is stressful-facilitate the deliberation process; (3) preparation self-evaluative: assess current capabilities-seek guidance from, e.g., occupational physicians; (4) preparation behavioral: planning return to work-allow for personalized solutions and encourage supervised return to work; (5) uncertain maintenance: guard against overload-train self-efficacy strategies and communication tactics; and (6) proactive maintenance: accept and prepare for the long term., Conclusions: Our results support the potential utility of tailoring CSs' work participation support along the stages of change., Implications for Cancer Survivors: We provided recommendations for intervention content and developed a stage-specific work participation intervention for CSs, the effectiveness of which will be evaluated in an upcoming randomized controlled trial., (© 2022. The Author(s).)

Purpose: To explore experienced health- and work-related problems of partners of patients with cancer, and their needs for support., Materials and Methods: Semi-structured interviews were conducted with Dutch partners of patients with cancer. Interviews were transcribed verbatim. Data were analysed thematically, following the six steps of Braun & Clarke., Results: Of 20 included partners (mean age: 50 years [31-63]), 60% was female. Five themes consistently emerged from the data: 1) overwhelming chaos calls for taking control; 2) impact of prolonged stress; 3) flexibility and support of the employer are crucial; 4) coping with family and friends is a delicate matter; and 5) support from healthcare professionals is needed, but not a given., Conclusions: Findings from this study show that the burden on partners of patients with cancer is substantial and cannot be overlooked. The state of survival mode that partners get into during the diagnosis, treatment and follow-up of their loved ones can have various implications on their physical and mental health, and work situation. Given this high burden and as legislation for care leave from work and (health care) support for partners appear to be insufficiently in place in the Dutch context, there is a need for better-targeted support for partners of patients with cancer. Implications for RehabilitationThe survival mode that partners of patients with cancer get into during the diagnosis, treatment and follow-up of their loved ones can have various implications on their physical and mental health, and work situation.This study showed that the burden on partners of patients with cancer is substantial and cannot be overlooked.Given this high burden and because legislation for care leave from work and (health care) support for partners appears to be insufficiently in place in the Dutch context, there is a need for better-targeted support for partners of patients with cancer.

Introduction: The number of cancer survivors in a working age is rising. An awareness of factors associated with adverse work outcomes, and of supportive interventions, is needed., Sources of Data: A narrative review of research obtained via several databases, including Medline and PsycINFO, was conducted., Areas of Agreement: A range of factors is associated with adverse work outcomes such as prolonged sick leave, delayed return to work, disability pension and unemployment in cancer survivors. They include the cancer type and treatment, fatigue, cognitive functioning, work factors and elements of health care systems. Effective supportive interventions encompass physical and multicomponent interventions., Areas of Controversy: The role of behaviour determinants and legislative and insurance systems is unclear. It is furthermore uncertain what the optimal timing of delivering supportive interventions is., Growing Points: Further focus on vulnerable groups, including specific cancer types and those with lower income, lower educational level and in precarious employment, is needed., Areas Timely for Developing Research: Recent developments are tailored and timely interventions., (© The Author(s) 2022. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

Purpose: Being able to work improves the quality of life of patients with cancer. Much is known about the return to work process of cancer survivors. Yet, studies focusing on the experiences of patients with advanced cancer who want to return to work or stay employed are scarce. Therefore, we aimed to explore the perceptions of patients with advanced cancer regarding work resumption and work retention and the barriers and facilitators they may experience., Methods: Semi-structured interviews were conducted. Patients were included if they: (1) were diagnosed with advanced cancer, (2) worked in paid employment at time of diagnosis, and (3) were currently back in paid employment or had the intention to return to paid employment. Participants were recruited through clinicians and patient organizations. Interviews were transcribed and thematically analysed using ATLAS.ti., Results: Fifteen patients (87% female, mean age 52 (SD 4; range 41-64)) were individually interviewed. Four main themes emerged from the data: (1) holding on to normalcy, (2) high understanding and divergent expectations, (3) social discomfort calls for patient-initiated alignment, and (4) laws and regulations require patient empowerment., Conclusion: Paid employment can contribute to the quality of life of patients with advanced cancer. The findings of this study might correct erroneous preconceptions about the work ability and work intention of patients with advanced cancer. Tools already developed for employers to support reintegration of patients with cancer should be further explored and translated to patients with advanced cancer., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objective: The objectives of this study were to explore the experiences and perspectives of general and occupational health care professionals regarding work resumption and work retention of patients with advanced cancer, and to identify barriers and facilitators these professionals may encounter., Methods: A qualitative design was applied, and individual semistructured interviews were conducted. General and occupational health care professionals were eligible to participate if they were involved in the work participation guidance of patients with advanced cancer, and were recruited through the network of the research team. Interview data were transcribed verbatim and analysed thematically via ATLAS.ti 9., Results: Interviewees (N = 17) had various occupational backgrounds, for example, occupational physician, reintegration consultant, and general practitioner. Four main themes emerged from the data: (1) Assumptions and hesitations, (2) Patient initiates stakeholder communication, (3) Role dispersion: who is in charge of what? and (4) Experience with legislation creates opportunities., Conclusion: Whereas most interviewees had positive experiences with, and/or optimistic expectations of, the work resumption and work retention of patients with advanced cancer, several barriers to the work participation guidance of these patients were identified. Suggestions for improvement include creating widespread awareness of the possibility of work participation of patients with advanced cancer and developing reintegration guidelines for advanced cancer., (© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

Background: Many cancer survivors experience physical and/or psychosocial problems affecting return to work (RTW) and work retention. Current interventions on RTW lack evidence regarding effectiveness, while interventions for work retention are missing. Partners of cancer survivors may also experience work- and health-related outcomes; yet, these consequences are not well understood. Here, the protocol of the STEPS study is described. The study aims are to: 1) evaluate the (cost-)effectiveness of a rehabilitation program for RTW and work retention in cancer survivors, and 2) assess health- and work-related outcomes among cancer survivors' partners., Methods: In a multicentre Randomized Controlled Trial (RCT), 236 working-age cancer survivors with an employment contract will be randomly allocated to a usual care group or an intervention group receiving a multidisciplinary rehabilitation program, combining occupational therapy facilitating work retention (e.g., energy management and self-efficacy training) and reintegration consultation addressing work-related issues (e.g., RTW planning and discussing workplace or task modifications with the supervisor). Alongside the RCT, a prospective cohort study will be conducted among cancer survivors' partners (n = 267). Participants in the RCT and cohort study will be asked to complete questionnaires at baseline, and after six and 12 months, assessing work- and health-related outcomes. Generalized estimating equations will be used to assess intervention's effectiveness, compared to usual care, regarding primary (i.e., working hours per week) and secondary outcomes. Also economic and process evaluations will be performed. For the cohort study, logistic or linear regression modelling will be applied assessing work- and health-related outcomes (primary outcome: working hours) of cancer survivors' partners, and what factors predict these outcomes., Results: The study is planned to start in September 2021; results are expected in 2023., Conclusion: Compared to usual care, the STEPS intervention is hypothesized to be (cost-)effective and the intervention could be a valuable addition to standard care helping cancer survivors to sustain employment. Further, it is expected that living with a cancer survivor has a substantial impact on work and health of partners, while specific groups of partners that are at particular risk for this impact are likely to be identified., Trial Registration: Dutch Trial Register ( NTR;NL9094 ; 15-12-2020)., (© 2021. The Author(s).)

Objective: Effective interventions supporting cancer survivors in work participation are lacking, possibly due to the poor fit between interventions and cancer survivors' needs. The 'Readiness for Return To Work' (RRTW) questionnaire could facilitate intervention development tailored to cancer survivors' needs. We performed a cross-cultural translation and adaptation of this questionnaire into Dutch and pre-tested its psychometric properties among cancer survivors., Methods: Questionnaire translation and adaptation were conducted using a systematic approach of: forward translation, synthesis, backward translation, consolidation of translations with an expert committee, and pre-testing. Pre-testing consisted of interviewing 40 cancer survivors, who completed the questionnaire., Results: The translated and adapted RRTW questionnaire showed reasonable psychometric properties, that is high item-to-stage correlations and internal consistency for all RRTW stages, except for the prepared for action - self-evaluative stage., Conclusions: The translated and adapted RRTW questionnaire may be useful for tailoring interventions to support cancer survivors in returning to and maintaining at work. However, some items showed poor psychometric properties and several factors, important for work participation, are not captured, for example personal, disease-, treatment- and/or work-related characteristics. We recommend to further test the RRTW questionnaire and to use it in combination with additional measurement instruments when developing tailored work participation interventions., (© 2020 John Wiley & Sons Ltd.)

Objective: Early access to work-related psychosocial cancer care can contribute to return to work of cancer survivors. We aimed to explore: (a) the extent to which hospital healthcare professionals conduct conversations about work-related issues with cancer survivors, (b) whether cancer survivors experience these conversations as helpful, and (c) the possible financial implications for cancer survivors of (not) discussing their work early on., Methods: The Dutch Federation of Cancer Patient Organizations developed and conducted a cross-sectional online survey, consisting of 27 items, among cancer survivors in the Netherlands., Results: In total, 3500 survivors participated in this study (71% female; mean age (SD) 56 (11) years). Thirty-two percent reported to have had a conversation about work-related issues with a healthcare professional in the hospital. Fifty-four percent indicated that this conversation had been helpful to them. Conversations about work-related issues took place more frequently with male cancer survivors, those aged 55 years or below, those diagnosed with gynecological, prostate, breast, and hematological or lymphatic cancer, those diagnosed ≤2 years ago, or those who received their last treatment ≤2 years ago. There was no statistically significant association between the occurrence of conversations about work-related issues and experiencing the financial consequences of cancer and/or its treatment as burdensome., Conclusions: Although conversations about work-related issues are generally experienced as helpful by cancer survivors, early access to work-related psychosocial cancer care in the hospital setting is not yet systematically offered., (© 2020 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)