Angela G. E. M. de Boer

Background: To reduce patients’ burden of completing lengthy questionnaires, Computerized Adaptive Tests (CATs) of the Patient-Reported Outcomes Measurement Information System (PROMIS®) are being implemented in multiple sclerosis (MS) care. The purpose of this study is to assess the test-retest reliability of seven PROMIS CATs in people with MS which is crucial for interpretation of changes in PROMIS CAT scores. Methods: This observational study was conducted in an academic hospital where the PROMIS CATs Fatigue, Depression, Anxiety, Physical Function, Sleep Disturbance, Ability to Participate in Social Roles and Activities, and Pain Interference, are routinely taken in the MS outpatient clinics. People with MS aged ≥ 18 years, who completed at least one PROMIS CAT were invited for a retest within 28 days. To assess reliability of the PROMIS CATs, Intraclass Correlation Coefficients (ICC), Standard Error of Measurements (SEM) and Smallest Detectable Change (SDC) were calculated. Results: The final study sample consisted of 58 people with MS. Forty-six (78%) participants were younger than 55, and 39 (66%) were female. The ICC (with 95% CI) of the PROMIS CAT item bank T-scores ranged from 0.59 (0.31–0.79) (Pain Interference), 0.75 (0.60–0.85) (Anxiety), 0.78 (0.64–0.86) (Depression), 0.85 (0.75–0.91) (Fatigue), 0.86 (0.75–0.92) (Participation), 0.86 (0.77–0.92) (Sleep Disturbance) to 0.86 (0.75–0.93) (Physical Function). SEM and SDC ranged from 4.1 and 11.6 for Pain Interference to 2.3 and 6.3 for Physical Function. Conclusions: Reliability of the PROMIS CATs was sufficient to good, except for Pain Interference which needs further investigation.

Purpose: Employers and professionals can support cancer survivors during sick leave and return to work (RTW). However, they often face challenges in providing RTW support and existing interventions targeted at them are scarce and show limited effectiveness . This study aims to examine information and support needs of employers and professionals regarding sick leave and RTW of cancer survivors. Methods: For this scoping review, studies published between 2014 and 2024 were systematically searched across five databases. Included studies had to (1) involve employers (direct supervisors or HR managers) or professionals (healthcare and occupational health professionals); (2) use a qualitative, quantitative, or mixed method study design; and (3) report at least one information or support need in the results. Identified needs were qualitatively synthesized using the Arena in work disability prevention model. Results: Forty studies from 15 countries identified a diversity of needs across the personal, healthcare, workplace, and legislative systems. Employers and professionals need information and support on late effects of cancer and its treatment, providing RTW support, legislation, and multidisciplinary collaboration. Additionally, employers need information on communication, while professionals need support in assessing cancer survivors’ work capacity and functional abilities. Conclusions: Diverse information and support needs were identified. Some needs were universal, while others were context-dependent, as they depended on country-specific legislation. Multidisciplinary collaboration among stakeholders is essential, and contextual factors should be integrated into future interventions. Implications for cancer survivors: Addressing employers’ and professionals’ needs enables more comprehensive and personalized support for cancer survivors and strengthens RTW support systems.

To examine the feasibility of the Individual Placement and Support (IPS-)intervention for people with acquired brain injury (ABI) in the chronic phase without an employer and explore initial outcomes. A feasibility study was conducted in three Dutch institutions specialized in post-ABI work participation. Participants included five IPS employment specialists (IPS-ES), 15 clients with ABI, 13 relatives, and eight employers. Clients' IPS-counseling lasted 1 year. Data were collected through questionnaires, IPS-ES administration, and researcher-administered home assessments. Feasibility was evaluated in terms of acceptability, implementation, practicality, adaptation, and limited-efficacy testing using descriptive analyses. Acceptability analyses showed median scores of 7, 8, 7, and 7 points across groups for counseling, and 8, 7, 6, and 7 points for counseling outcomes (scale 1 (not) - 10 (very satisfied)). Implementation showed reasonable model fidelity, with strengths in IPS-ES guidance and expertise, and challenges in competitive employment focus, rapid job search and placement, and integration of health and employment services. Practicality was sufficient. Several adaptations were suggested. Limited-efficacy testing showed eight of 15 clients (53%) obtaining paid work. IPS appeared feasible: Implementation was reasonably model-faithful, stakeholders were satisfied, and >50% achieved paid employment. Broader implementation is recommended, addressing identified challenges and continuing evaluation.

Purpose: A better understanding of survivors’ information and support needs could guide the design of more meaningful and effective interventions. This scoping review examines cancer survivors’ needs in the context of cancer and work. Methods: For this scoping review, we searched 5 databases for studies published in 2014–2024 reporting on cancer survivors’ information and support needs related to cancer and work. Data were extracted and identified needs were qualitatively synthesized using the Arena model of work disability. Results: Eighty-five studies from 22 countries were included, reporting on 26 themes concerning information needs and 56 themes concerning support needs. Within the personal system, survivors need information on how cancer and treatment affect work, and they need support through understanding from employers and colleagues. Within the workplace system, needs included information on return to work timing and phases, and support via flexible, personalized work adjustments. Within the healthcare system, survivors need information on cancer’s impact on work (dis)ability, and support includes tailored advice and encouragement. Survivors emphasized the importance of work being proactively addressed in clinical care. Within the legislative and insurance systems, needs related to information on employee rights and support in navigating disability benefit procedures were identified. Conclusions: The diversity in needs suggests that interventions should be tailored to individual cancer survivors, while considering broader contextual factors Future interventions should include multiple stakeholders, since needs exist throughout the systems of the Arena model. Implications for Cancer Survivors: There is a need for tailored interventions to support work participation of cancer survivors.

Background/Objectives: Adolescents and young adults (AYAs) with cancer often begin their careers later in life and are at risk of negative work-related outcomes. Research into and tailored support programs for AYAs diagnosed during higher education remain limited. An improved understanding of AYAs’ experiences is essential in guiding the development of age-appropriate support programs. This study explored the impact of cancer and the challenges AYAs face in educational participation and the transition to work. Methods: A qualitative study was conducted with thirteen AYAs diagnosed with cancer during higher education. Participants were interviewed using a semi-structured guide. In collaboration with patient experts as co-researchers, data were analyzed via thematic analysis. Results: Eight analytically derived themes reflected AYA students’ experiences: (1) Meaning and importance of education, (2) Reduced performance, (3) Recovery and expectations, (4) Interruption and delay, (5) Transition to work, (6) Disclosure, (7) Challenges related to the context of students, and (8) Experienced lack of support. The themes were clustered into four overarching thematic categories: Meaningful participation, Impact on performance, Academic progress and career transition, and Challenges in navigation. Conclusions: Our findings provide greater insight into the significance of educational participation for AYAs. AYA students encounter challenges stemming from both diagnosis-related changes in functioning and from contextual factors tied to their roles as students and new starters in the labor market. Navigating the healthcare, education, and social systems is complex and AYAs often lack adequate support when resuming their education or transitioning to work. Tailored support programs in healthcare and educational settings should be developed to help AYAs harness their strong motivation to resume studies, enter the labor market, and achieve their full potential.

Purpose This study compared characteristics of cancer survivors who became unemployed after diagnosis with those who remained employed and evaluated the association between employment status and the impact on daily life. Methods A cross-sectional online survey was conducted among adult cancer survivors employed at diagnosis. Participants were categorized based on employment status post-diagnosis. Univariate and multivariate binomial generalized linear models and multinomial logistic regression analyses were applied. Results Among 2576 cancer survivors (mean age: 53.4 years, 77% female, 62% 0–5 years post-diagnosis), 1704 (66%) remained employed, while 872 (34%) became unemployed. Becoming unemployed was associated with older age [OR; 95% CI, 1.02; 1.01–1.03], low [OR; 95% CI, 2.43; 1.05–3.45] or intermediate education [OR; 95% CI, 1.60; 1.33–1.93], and indicating (probably) not getting better [OR; 95% CI, 3.94; 3.05–5.07] or having chronic cancer [OR; 95% CI, 1.68; 1.25–2.25]. Prostate cancer survivors and those diagnosed ≤5 years prior were less likely to become unemployed than those with other types of cancer or those diagnosed longer ago. Becoming unemployed was associated with a negative influence on psychological [OR; 95% CI, 2.22; 1.80–2.74] and physical well-being [OR; 95% CI, 1.96; 1.61–2.38]. Those who became unemployed were more likely than those who remained employed to perceive that financial consequences negatively influenced multiple aspects of daily life, including family and social relationships, participation in sports, hobbies, and leisure activities, for themselves as well as for their partners and children. Conclusion Unemployment was disproportionately prevalent among older, less-educated individuals and individuals with advanced cancer and was associated with declines in personal and family well-being due to experienced financial consequences. Implications for Cancer Survivors Identifying cancer survivors vulnerable to unemployment can guide timely, targeted support to help them maintain employment if desired. The observed link between unemployment and daily life emphasizes the importance of addressing employment issues within survivorship care.

Purpose: Cancer affects a great number of people during working life, and tailored interventions targeting this population are important. The present study, focused on the developmental phase of a work-oriented intervention, aimed to describe work-related experiences and needs among people undergoing curative cancer therapy. Methods: People (n = 22, age md 55 years, range 39–64, purposive sampling) undergoing adjuvant or neo-adjuvant chemo-/radiotherapy for breast (n = 12), prostate (n = 5), or colorectal (n = 5) cancer were individually interviewed using a semi-structured interview guide covering their ability to work and work-related facilitators, barriers, and needs. Qualitative content analysis with an inductive approach was applied. Results: When undergoing curative cancer treatment, striving for work–life balance and a normal life is challenging, but necessary for wellbeing, according to the participants. Five subthemes described their experiences and needs: “Cancer is not my identity, and working helps me experience a sense of self,” “I mostly have confidence in my future ability to work,” “I need to find a new balance between work, private life, and my changed health needs,” “Having flexible working conditions helps me work, and both strengthens and limits my wellbeing,” and “Having access to individual support, in which others and I participate, affects my ability to work.” Conclusion: While undergoing curative cancer therapy, striving for work–life balance and a normal life is challenging but necessary for wellbeing. Our study findings suggest that a work-oriented intervention tailored to individual needs, flexibility in working conditions, and cooperation between the employee and various stakeholders are warranted during the early stage of cancer therapy.

Background People with cancer are 1.4 times more likely to be unemployed than people without a cancer diagnosis. Therefore, it is important to investigate whether programmes to enhance the return‐to‐work (RTW) process for people who have been diagnosed with cancer are effective. This is an update of a Cochrane review first published in 2011 and updated in 2015. Objectives To evaluate the effectiveness of non‐medical interventions aimed at enhancing return to work (RTW) in people with cancer compared to alternative programmes including usual care or no intervention. Search methods We searched CENTRAL (the Cochrane Library), MEDLINE, Embase, CINAHL, PsycINFO and three trial registers up to 18 August 2021. We also examined the reference lists of included studies and selected reviews, and contacted authors of relevant studies. Selection criteria We included randomised controlled trials (RCTs) and cluster‐RCTs on the effectiveness of psycho‐educational, vocational, physical or multidisciplinary interventions enhancing RTW in people with cancer. The primary outcome was RTW measured as either RTW rate or sick leave duration measured at 12 months' follow‐up. The secondary outcome was quality of life (QoL). Data collection and analysis Two review authors independently assessed RCTs for inclusion, extracted data and rated certainty of the evidence using GRADE. We pooled study results judged to be clinically homogeneous in different comparisons reporting risk ratios (RRs) with 95% confidence intervals (CIs) for RTW and mean differences (MD) or standardised mean differences (SMD) with 95% CIs for QoL. Main results We included 15 RCTs involving 1477 people with cancer with 19 evaluations because of multiple treatment groups. In this update, we added eight new RCTs and excluded seven RCTs from the previous versions of this review that were aimed at medical interventions. All included RCTs were conducted in high‐income countries, and most were aimed at people with breast cancer (nine RCTs) or prostate cancer (two RCTs). Risk of bias We judged nine RCTs at low risk of bias and six at high risk of bias. The most common type of bias was a lack of blinding (9/15 RCTs). Psycho‐educational interventions We found four RCTs comparing psycho‐educational interventions including patient education and patient counselling versus care as usual. Psycho‐educational interventions probably result in little to no difference in RTW compared to care as usual (RR 1.09, 95% CI 0.96 to 1.24; 4 RCTs, 512 participants; moderate‐certainty evidence). This means that in the intervention and control groups, approximately 625 per 1000 participants may have returned to work. The psycho‐educational interventions may result in little to no difference in QoL compared to care as usual (MD 1.47, 95% CI −2.38 to 5.32; 1 RCT, 124 participants; low‐certainty evidence). Vocational interventions We found one RCT comparing vocational intervention versus care as usual. The evidence was very uncertain about the effect of a vocational intervention on RTW compared to care as usual (RR 0.94, 95% CI 0.78 to 1.13; 1 RCT, 34 participants; very low‐certainty evidence). The study did not report QoL. Physical interventions Four RCTs compared a physical intervention programme versus care as usual. These physical intervention programmes included walking, yoga or physical exercise. Physical interventions likely increase RTW compared to care as usual (RR 1.23, 95% CI 1.08 to 1.39; 4 RCTs, 434 participants; moderate‐certainty evidence). This means that in the intervention group probably 677 to 871 per 1000 participants RTW compared to 627 per 1000 in the control group (thus, 50 to 244 participants more RTW). Physical interventions may result in little to no difference in QoL compared to care as usual (SMD −0.01, 95% CI −0.33 to 0.32; 1 RCT, 173 participants; low‐certainty evidence). The SMD translates back to a 1.8‐point difference (95% CI −7.54 to 3.97) on the European Organisation for Research and Treatment of Cancer Quality of life Questionnaire Core 30 (EORTC QLQ‐C30). Multidisciplinary interventions Six RCTs compared multidisciplinary interventions (vocational counselling, patient education, patient counselling, physical exercises) to care as usual. Multidisciplinary interventions likely increase RTW compared to care as usual (RR 1.23, 95% CI 1.09 to 1.33; 6 RCTs, 497 participants; moderate‐certainty evidence). This means that in the intervention group probably 694 to 844 per 1000 participants RTW compared to 625 per 1000 in the control group (thus, 69 to 217 participants more RTW). Multidisciplinary interventions may result in little to no difference in QoL compared to care as usual (SMD 0.07, 95% CI −0.14 to 0.28; 3 RCTs, 378 participants; low‐certainty evidence). The SMD translates back to a 1.4‐point difference (95% CI −2.58 to 5.36) on the EORTC QLQ‐C30. Authors' conclusions Physical interventions (four RCTs) and multidisciplinary interventions (six RCTs) likely increase RTW of people with cancer. Psycho‐educational interventions (four RCTs) probably result in little to no difference in RTW, while the evidence from vocational interventions (one RCT) is very uncertain. Psycho‐educational, physical or multidisciplinary interventions may result in little to no difference in QoL. Future research on enhancing RTW in people with cancer involving multidisciplinary interventions encompassing a physical, psycho‐educational and vocational component is needed, and be preferably tailored to the needs of the patient.