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BACKGROUND: Meningioma are common benign intracranial tumours, that can cause severe neurological and daily functional problems, sometimes requiring lifelong care and support. Current practice and guidelines lack focus on these long-term sequelae. Value-Based Healthcare (VBHC) initiatives aim to increase the value of care for patients, but continuous evaluation and improvement of these initiatives is required. According to the Plan-Do-Study-Act (PDSA) cycle, a model for continuous healthcare evaluation and improvement, we explored issues in meningioma care trajectories, possible high impact initiatives to improve these issues, and the implementability of these initiatives. MATERIAL AND METHODS: Previously, issues in the meningioma care trajectories were identified through a survey by The Netherlands Comprehensive Cancer Organisation. Using a grounded theory approach, a thematic framework was constructed based on this data and used for further data collection through three semi-structured interviews with patient-partner dyads (i.e. pairs) and four focus groups with patient-partner dyads and healthcare providers (both two focus groups). RESULTS: Issues in meningioma care trajectories reported by patient-partner dyads and healthcare providers were related to information, care and support, logistics, and diagnostics and treatment. Most important issues were lack of information about intervention and outcomes, and lack of support after treatment. A reported solution for many issues was the incorporation of a case manager. Other possible solutions were implementation of routine use of patient-reported outcome measures (PROMs) or a rehabilitation program, and formalization of these care trajectories. The most important barriers for these solutions were budget, capacity, ICT infrastructure, qualified personnel, and know-how. CONCLUSION: Implementation of a few simple solutions (e.g. case manager) may improve the majority of experienced issues in meningioma care trajectories. Information on the identified barriers and facilitators can be used to ensure successful implementation of these practice changing initiatives, which need iterative evaluation in PDSA cycles.

Background:A vast number of generic and disease specific questionnaires are used to measure health-related quality of life (HRQoL) in meningioma research. We aimed to assess the relevance of issues mentioned in these questionnaires and to compare the patient’s perspective with the perspective of the health care professional (HCP) on meningioma-related symptoms and problems.Methods:A systematic literature search was conducted to identify all HRQoL items and questionnaires. Both patients and HCPs had to rate the relevance of each item on a 4-point Likert scale (ranging from ‘not at all’ to ‘very much’): items were relevant when ≥ 30% of patients or HCPs scored the items as relevant. For each questionnaire the percentage of relevant items was assessed. All identified items were categorized into different domains of HRQoL, which were discussed in semi-structured interviews with both groups. The aim of these interviews was to reveal all issues of meningioma patients, including issues not present in the existing questionnaires.Results:Included in this study were 14 patients (mean age 56 years, 71% female) and 7 HCPs (2 neurosurgeons, 2 neurologists, 2 radiotherapists, 1 rehabilitation specialist, mean experience 15 years). Fourteen different questionnaires were found in the literature, including 140 unique issues. Patients and HCPs considered 25–60% and 90–100% of the items of each questionnaire as relevant, respectively. When comparing the 12 most relevant issues as assessed by meningioma patients and HCPs, only 5 issues were the same. Issues missing in the already existing questionnaires were mostly issues in the psychological and cognitive domains (e.g. multitasking and stress-management).Conclusion:Existing HRQoL questionnaires do not fully cover the problems of meningioma patients. Patients and HCPs differ in opinion what the most relevant issues are of meningioma patients. Both findings support the need to develop and validate an HRQoL questionnaire specific for meningioma patients.