OS09.7.A Experiences and unmet needs of grade 2-4 glioma patients and (health care) professionals regarding (return to) work: the BrainWork study

Abstract

Abstract Background In the Netherlands, 1,200 persons are annually diagnosed with a glioma, of whom many are of working age. Studies regarding cancer and work often exclude primary brain tumour patients, due to specific problems these patients may experience. Hence, the aim was to explore the experiences and unmet needs regarding return to work, work retention, or work discontinuation of both grade 2-4 glioma patients, and involved (health care) professionals. Material and Methods Individual semi-structured interviews were held with grade 2-4 glioma patients as well as health care and occupational professionals involved in (the care for) glioma patients. Grade 2-4 glioma patients were eligible to participate if they were of working age and had an employment contract at time of diagnosis. Recruitment of patients was performed via three hospitals and via social media. The professionals were recruited via the network of researchers linked to BrainWork. Interviews were transcribed verbatim, and thematically analysed using ATLAS.ti9. Results Nineteen glioma patients participated in this study (68% male, mean age 45 (SD 11), 58% grade 2, 16% grade 3, 26% grade 4). The main themes identified were: 1) impact of glioma-specific consequences on work ability, 2) communicating about an invisible, progressive illness at work: discrepancies in perceptions, 3) working with a brain tumour: looking at possibilities, and 4) navigating offers of (work-related) support. Sixteen professionals were interviewed (e.g., clinical neuro-oncologist, insurance physician) with an average experience of fifteen years. Four key themes were identified: (1) distilling the right approach: generic or specific vocational rehabilitation?; (2) work adjustments are common, but information deficiency causes delay; (3) opinions about work ability are diverse and influenced by glioma-specific characteristics; and (4) need for attention and tailored recommendations regarding glioma and work. Conclusions Working is possible for glioma patients although they encounter glioma-specific problems, and commonly need work adjustments. These adjustments should be communicated early, to prevent employer-employee conflicts. A specific reintegration plan, including a neuropsychological assessment and a glioma-tailored rehabilitation program, is considered the most adequate approach. Open communication between the patient and the (work) environment in general is necessary to abate discrepancies in perception. Communication between health care professionals and occupational professionals should be improved to diminish differences in opinions about the work ability of glioma patients. Finally, more attention and more tailored recommendations regarding glioma and work are necessary.