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.

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.

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.

Work-related support in clinical care for patients with a chronic disease: development of an intervention.

BACKGROUND: Patients with a chronic disease are more vulnerable in the labor market, and work-related support in clinical care would enhance the timely support greatly needed in each phase of their working life. This paper describes the development of a generic stay-at-work intervention to provide work-related support in clinical care to patients with a chronic disease. METHODS: Steps 1-4 of Intervention Mapping (IM) were combined with action research principles. A needs assessment (Step 1) involved the project group formation, a literature review, qualitative studies with healthcare professionals (HCPs; n = 9) and patients (n = 10), consultation with financial staff and testing, and resulted in objectives (Step 2). Guided by methods and applications (Step 3), the intervention was developed, tested and finalized (Step 4). RESULTS: The needs assessment revealed the importance of behavioral change in HCPs, including changing attitude, self-efficacy, and social influence. For that purpose, a pathway and training sessions were developed. Testing these unveiled the need for practical tools and intervision. The final intervention comprises a care pathway as part of working routines, including screening, risk stratification, and tailored support. Practical tools, training sessions, and intervision for HCPs were developed. CONCLUSIONS: Combining IM with action research principles resulted in a generic stay-at-work intervention in clinical care via behavioral change in HCPs. A generic care pathway, practical tools, training sessions, and intervision were developed. More specific alignment to specific patient groups is possible. To implement the intervention in another hospital, the local context, (financial) resources, and the national legislation should be considered.

Cancer survivors' experiences with conversations about work-related issues in the hospital setting.

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.

Cancer Survivorship Care: Person Centered Care in a Multidisciplinary Shared Care Model.

Survivors of childhood and adult-onset cancer are at lifelong risk for the development of late effects of treatment that can lead to serious morbidity and premature mortality. Regular long-term follow-up aiming for prevention, early detection and intervention of late effects can preserve or improve health. The heterogeneous and often serious character of late effects emphasizes the need for specialized cancer survivorship care clinics. Multidisciplinary cancer survivorship care requires a coordinated and well integrated health care environment for risk based screening and intervention. In addition survivors engagement and adherence to the recommendations are also important elements. We developed an innovative model for integrated care for cancer survivors, the "Personalized Cancer Survivorship Care Model", that is being used in our clinic. This model comprises 1. Personalized follow-up care according to the principles of Person Centered Care, aiming to empower survivors and to support self management, and 2. Organization according to a multidisciplinary and risk based approach. The concept of person centered care is based on three components: initiating, integrating and safeguarding the partnership with the patient. This model has been developed as a universal model of care that will work for all cancer survivors in different health care systems. It could be used for studies to improve self efficacy and the cost-effectiveness of cancer survivorship care.