Abstract
BackgroundThe clinical relevance of Health-Related Quality of Life (HRQoL) in meningioma patients has been increasingly acknowledged in recent years. Various questionnaires have been used. However, almost none of these questionnaires has been particularly developed for and/or validated in this patient group. Therefore, the aim of this study was to assess the relevance and comprehensiveness of existing HRQoL questionnaires used in meningioma research and to assess the agreement between patients and health care professionals (HCPs) on the most relevant and important HRQoL issues.MethodsA systematic literature search, following the PRISMA statement, was conducted to identify all HRQoL questionnaires used in meningioma research. Semi-structured interviews were organized with patients and HCPs to (1) assess the relevance of all issues covered by the questionnaires (score 0–3: not relevant–highly relevant), (2) assess the ten most important issues, and (3) identify new relevant HRQoL issues.ResultsFourteen different questionnaires were found in the literature, comprising 140 unique issues. Interviews were conducted with 20 patients (median age 57, 71% female) and 10 HCPs (4 neurosurgeons, 2 neurologists, 2 radiotherapists, 1 rehabilitation specialist, 1 neuropsychologist; median experience 13 years). Meningioma patients rated 17–80% of the issues in each of the questionnaires as relevant, HCPs 90–100%. Patients and HCPs agreed on the relevance of only 49 issues (35%, Cohen’s kappa: 0.027). Both patients and HCPs considered lack of energy the most important issue. Patients and HCPs suggested five additional relevant issues not covered by current HRQoL questionnaires.ConclusionsExisting HRQoL questionnaires currently used in meningioma patients do not fully cover all relevant issues to these patients. Agreement between patients and HCPs on the relevance of issues was poor. Both findings support the need to develop and validate a meningioma-specific HRQoL questionnaire.
Highlights
Meningioma is the most prevalent (53.4%) type of benign central nervous system tumor with an incidence of 7.86 per 100.000 person years [28]
The aim of these semi-structured interviews was to assess the content validity and consisted of three parts: (1) to identify all relevant Health-Related Quality of Life (HRQoL) issues, (2) to determine the relevance of all issues identified in the literature search, including those in the existing HRQoL questionnaires, and (3) to determine the ten most important HRQoL issues
The Functional Assessment of Cancer Therapy-General (FACT-G) and Functional Assessment of Cancer Therapy-Brain (FACT-BR) questionnaires have been validated in meningioma patients [5, 42]
Summary
Meningioma is the most prevalent (53.4%) type of benign central nervous system tumor with an incidence of 7.86 per 100.000 person years [28]. A Health-Related Quality of Life (HRQoL) instrument is a multidimensional outcome measure, including domains on physical, psychological and social functioning as well as symptoms induced by the disease and its treatment, thereby covering function on all three ICF levels [14]. The aim of this study was to assess the relevance and comprehensiveness of existing HRQoL questionnaires used in meningioma research and to assess the agreement between patients and health care professionals (HCPs) on the most relevant and important HRQoL issues. Semistructured interviews were organized with patients and HCPs to (1) assess the relevance of all issues covered by the questionnaires (score 0–3: not relevant–highly relevant), (2) assess the ten most important issues, and (3) identify new relevant HRQoL issues
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