Changes in income and employment after diagnosis among patients with multiple myeloma in The Netherlands.

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.

Disentangling trust of patients with rare cancer in their healthcare professionals and the healthcare system: a qualitative interview study.

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.

Internet-based cognitive rehabilitation for working cancer survivors: results of a multicenter randomized controlled trial.

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.

Work-related experiences and unmet needs of patients with a malignant glioma and relevant professionals: the BrainWork study.

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.

Outcomes and Feasibility of an Occupational Care Programme (TERRA) to Support Work Ability of Rare and Advanced Cancer Patients: A Report of 7 Cases.

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 three 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. DISCUSSION/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.

The solitary versus supported experience: Care inequality between rare and common cancer patients.

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.

A multimodal interdisciplinary rehabilitation programme (HAPPY) for patients undergoing allogeneic non-myeloablative haematopoietic stem cell transplantation: A feasibility study.

PURPOSE: To evaluate the feasibility of the multimodal interdisciplinary rehabilitation programme HAPPY, targeting patients with haematological malignancy and undergoing allogeneic non-myeloablative haematopoietic stem cell transplantation (NMA-HSCT). METHOD: A single arm longitudinal design was applied to test the feasibility of the 6-month HAPPY programme, which consisted of motivational interviewing dialogues, individual supervised physical exercise training, relaxation exercises, nutritional counselling, and home assignments. The feasibility measures included acceptability, fidelity, exposure, practicability, and safety. Descriptive statistics were conducted. RESULTS: From November 2018 to January 2020, thirty patients (mean age (SD) 64.1 (6.5)) were enrolled in HAPPY, of whom 18 patients completed the programme. Acceptance was 88%; attrition 40%; fidelity was 80%-100% for all HAPPY elements except phone calls; exposure of HAPPY elements at the hospital reflected individual differences but was acceptable, whereas exposure of HAPPY elements at home was low. Planning of HAPPY for the individual patient was time consuming, and patients were dependent of reminders and incites from the health care professionals. CONCLUSION: Most elements of the rehabilitation programme HAPPY were feasible. Yet, HAPPY will benefit from further development and simplifications before an effectiveness study can be conducted, especially regarding improvement of the intervention elements supporting patients at home.

Establishing General Working Population Norms for the Cognitive Symptom Checklist-Work.

PURPOSE: The Cognitive Symptom Checklist-Work (CSC-W) is a self-report measure to assess cognitive symptoms (i.e., memory and executive function) in working adults with cancer. To date, general working population norm data are lacking worldwide. We established CSC-W norm values in the general working population, and assessed associations of CSC-W scores with work and health-related factors. METHODS: This cross-sectional study consisted of 1,000 Dutch working adults, of whom data was collected through an online respondent panel. The sample was stratified for sex and age, and data were weighted. Summary scores of the CSC-W total scale, and memory and executive function symptoms subscales, were determined (e.g., means, percentiles). Z- and T-scores were calculated, and analysis of (co)variance has been applied. RESULTS: Cognitive symptom scores were relatively stable across age groups, but 18-39-year-old respondents reported lower memory and executive function than respondents in other age groups. Symptom scores of memory function (mean 29.1; SD = 16.7) were higher for all age groups and in both sexes compared to executive function (mean 22.1; SD = 16.8). No sex differences in memory and executive function were observed. Higher symptom scores were associated with performing non-manual work only, manual work only, self-reported long-term illness, and higher levels of depressive symptoms and fatigue. CONCLUSION: The CSC-W norms may enhance the interpretation and facilitate the analysis of self-reported cognitive symptoms in patients with cancer at work. Our findings may support health care professionals in identifying working adults with cancer with cognitive symptoms and in developing personalized treatment.

Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type: results of the multicentre observational eQuiPe study.

PURPOSE: Patients with a rare cancer face difficulties during their disease trajectory, such as delayed diagnosis and lack of expert care. However, little is known about their perceived quality of care (QoC) and quality of life (QoL) in the advanced disease stage. We aimed to assess the QoC and QoL as experienced by patients with advanced rare cancers compared to patients with advanced common cancers. METHODS: In this cross-sectional study, baseline data of patients with advanced cancer from the multicentre, longitudinal, observational eQuipe study were analysed. Multivariable linear regression analyses were conducted to assess differences in experienced QoC (continuity of care, continuity of information, and satisfaction with care) and QoL (functioning, symptoms, overall QoL, and social wellbeing) between advanced rare and common cancer patients. RESULTS: Of the 1087 included patients, 106 (9.8%) had a rare cancer type. In comparison to patients with advanced common cancers, patients with advanced rare cancers experienced significantly lower continuity of care (77.8 vs. 71.1 respectively, p = 0.011) and social functioning (78.8 vs. 72.6 respectively, p = 0.012). No differences were found regarding continuity of information, satisfaction with care, overall QoL, and social wellbeing. CONCLUSIONS: Patients with advanced rare cancers experience less continuity of care, and the impact of the disease on social and family life seems higher compared to patients with advanced common cancers. IMPLICATIONS FOR CANCER SURVIVORS: To enhance the QoC and QoL of patients with advanced rare cancers, supportive care should mainly focus on improving continuity of care and patients' social functioning.

Tailoring work participation support for cancer survivors using the stages of change: perspectives of (health care) professionals and survivors.

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.

Trajectories of cognitive symptoms and associated factors in cancer survivors after return to work: an 18-month longitudinal cohort study.

PURPOSE: Cognitive symptoms affect cancer survivors' functioning at work. To date, cognitive symptoms trajectories in working cancer survivors and the factors associated with these trajectories have not been examined. METHODS: Data from a heterogeneous group of working cancer survivors (n = 379) of the longitudinal "Work-Life-after-Cancer" study, linked with Netherlands Cancer Registry data, were used. The Cognitive Symptom Checklist-Work was administered at baseline (within the first 3 months after return to work), 6-, 12-, and 18-month follow-up to measure self-perceived memory and executive function symptoms. Data were analyzed using group-based trajectory modeling. RESULTS: Four trajectories of memory and executive function symptoms were identified. All memory symptoms trajectories were stable and labeled as "stable-high" (15.3% of the sample), "stable-moderately high" (39.6%), "stable-moderately low" (32.0%), and "stable-low" (13.0%). Executive function symptoms trajectories changed over time and were labeled as "increasing-high" (10.1%), "stable-moderately high" (32.0%), "decreasing-moderately low" (35.5%), and "stable-low" (22.4%). Higher symptoms trajectories were associated with older age, longer time from diagnosis to return to work, more quantitative work demands, and higher levels of depressive symptoms at baseline. CONCLUSIONS: In cancer survivors who returned to work, four cognitive symptoms trajectory subgroups were identified, representing different but relatively stable severity levels of cognitive symptoms. IMPLICATIONS FOR CANCER SURVIVORS: To identify cancer survivors with higher symptoms trajectories, health care providers should assess cognitive symptoms at baseline after return to work. In case of cognitive symptoms, it is important to also screen for psychological factors to provide appropriate guidance.

'Nobody can take the stress away from me': a qualitative study on experiences of partners of patients with cancer regarding their work and health.

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.

Rare cancer and return to work: experiences and needs of patients and (health care) professionals.

PURPOSE: Patients with a rare cancer often face delays in their diagnostic and treatment trajectory, which may affect their work. In this study, we explored experiences and needs of: 1) patients with a rare cancer regarding return to work (RTW) and work retention, and 2) (health care) professionals (HCPs) regarding work-related support of patients with a rare cancer, throughout their disease trajectory. METHODS: Semi-structured, in-depth interviews with working-age patients with a rare cancer (n = 16), and HCPs (n = 9) were conducted. During the interviews, a predefined topic list was used. Interviews were transcribed verbatim and analysed by means of thematic analysis. RESULTS: In total, three themes emerged from the interviews: 1) Awareness in patients and HCPs as a first step towards work, 2) Being/becoming an expert is a tough job, and 3) Enhancing employability through early personalized guidance. CONCLUSIONS: Patients with a rare cancer are confronted with uncertainties regarding work, due to an overall lack of knowledge and experience with these types of cancer. Raising awareness among patients, HCPs and employers about rare cancer and its implications, and providing timely individualized, supportive occupational care are required to improve rare cancer patients' ability to work.Implications for rehabilitationRecognizing and paying attention to the work-related consequences of a rare cancer diagnosis and its treatment is essential to facilitate rare cancer patients' occupational rehabilitation process.Multidisciplinary collaboration and involvement of HCPs specialized in rare cancer are required to provide suitable work-related support.A personalized approach is necessary to adequately address rare cancer patients' RTW and work retention needs.

International consensus on the initial diagnostic workup of cancer of unknown primary.

BACKGROUND: Although the incidence of Cancer of Unknown Primary (CUP) is estimated to be 1-2 % of all cancers worldwide, no international standards for diagnostic workup are yet established. Such an international guideline would facilitate international comparison, provide adequate incidence and survival rates, and ultimately improve care of patients with CUP. METHODS: Participants for a four round modified Delphi study were selected via a CUP literature search in PubMed and an international network of cancer researchers. A total of 90 CUP experts were invited, and 34 experts from 15 countries over four continents completed all Delphi survey rounds. FINDINGS: The Delphi procedure resulted in a multi-layer CUP classification for the diagnostic workup. Initial diagnostic workup should at least consist of history and physical examination, full blood count, analysis of serum markers, a biopsy of the most accessible lesion, a CT scan of chest/abdomen/pelvis, and immunohistochemical testing. Additionally, the expert panel agreed on the need of an ideal diagnostic lead time for CUP patients. There was no full consensus on the place in diagnostic workup of symptom-guided MRI or ultrasound, a PET/CT scan, targeted gene panels, immunohistochemical markers, and whole genome sequencing. INTERPRETATION: Consensus was reached on the contents of the first diagnostic layer of a multi-layer CUP classification. This is a first step towards full consensus on CUP diagnostics, that should also include supplementary and advanced diagnostics.

Quality of life of patients with rare cancer: a comparison with patients with colorectal cancer and the association with disease trajectory-related factors.

PURPOSE: Differences in quality of life (QoL) between patients with rare and common cancer might be explained by the specific challenges patients with rare cancer face during their disease trajectory, but research is scarce. This study aimed to (1) assess the difference in QoL between patients with rare and common cancer (i.e. colorectal cancer (CRC)) and (2) examine the association between disease trajectory-related factors and QoL in patients with rare cancer. METHODS: Cross-sectional data were collected among adults with rare cancer by a nationwide online survey in the Netherlands. For comparison with patients with CRC, data from the Prospective Dutch Colorectal Cancer (PLCRC) cohort were used. Associations were assessed by linear regression analyses. RESULTS: Data from 1525 patients with rare cancer and 1047 patients with CRC were analysed. Having a rare cancer was significantly associated with a lower QoL compared to having CRC (p < 0.001). Disease trajectory-related factors significantly associated with QoL in patients with rare cancer were time until diagnosis, misdiagnoses, information on best treatment options, information on late and/or long-term effects, and both satisfaction with physician and specialized nurse care (all: p < 0.05). CONCLUSION: Patients with rare cancers have a lower self-reported QoL than patients with CRC, and several disease trajectory-related factors are associated with QoL in patients with rare cancer. IMPLICATIONS FOR CANCER SURVIVORS: To improve QoL of patients with rare cancer, appropriate guidance and support by healthcare professionals throughout the disease trajectory are needed, as well as early diagnosis and proper referral to centres of expertise.

Cancer survivors and adverse work outcomes: associated factors and supportive interventions.

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.

Experiences and perspectives of patients with advanced cancer regarding work resumption and work retention: a qualitative interview study.

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.

Work resumption and retention in patients with advanced cancer: Experiences and perspectives of general and occupational health care professionals.

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.

Challenges and controversies patients and (health care) professionals experience in managing vaginal, vulvar, penile or anal cancer: The SILENCE study.

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.

Neuropsychological test performance and self-reported cognitive functioning associated with work-related outcomes in occupationally active cancer survivors with cognitive complaints.

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 f2 = 0.014) and physical functioning at work (Cohen's f2 = 0.13). Furthermore, higher motor performance was associated with better work ability (Cohen's f2 = 0.018). In addition, self-reported work-related cognitive complaints were associated with self-reported work-related outcomes (Cohen's f2 = 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.