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Both dementia and brain tumor patients exhibit cognitive decline during the course of their disease. They might therefore experience similar problems with cognitively complex daily activities (i.e., instrumental activities of daily living (IADL)). The study's objective is to evaluate if the Amsterdam IADL Questionnaire© (A-IADL-Q), a 70-item IADL questionnaire developed for and validated in early dementia patients, is also applicable to glioma patients. The evaluation consisted of three steps. Predetermined decision rules defined which activities were retained, altered, added or excluded. In the first step, 6 neuro-oncology health care professionals (HCP) and 10 glioma patient-proxy dyads were asked to evaluate the 70 A-IADL-Q activities. In the second step, in-depth interviews were conducted with 6 HCPs and 6 other patient-proxy dyads to generate relevant activities specific to glioma patients not covered by the A-IADL-Q. In the third step, 6 new patient-proxy dyads were cognitively debriefed with the list of activities constructed in the previous steps. Results indicated that in step 1, after alterations and exclusions, 28/70 activities could be retained. Nine newly generated activities were subsequently added in step 2. In step 3, the 37 activities were presented to the patient-proxy dyads. Based on their input, several additional alterations and exclusions were made resulting in a list of 32 activities. In conclusion, this evaluation of the A-IADL-Q showed that dementia-specific IADL activities are only partly applicable to glioma patients, and that the addition of glioma specific IADL activities is necessary to capture the IADL construct. This underlines the need for a disease-specific IADL questionnaire for brain tumor patients.

Background Everyday functioning can be assessed using measures of basic activities of daily living (BADL) or instrumental activities of daily living (IADL). The aim of this review was to provide an overview of the scope and specific content of BADL and/or IADL covered by currently used questionnaires in adult brain tumor patient studies. Methods Electronic databases were searched up to April 2017 to identify all eligible questionnaires with items regarding BADL/IADL in studies with adult brain tumor patients. Articles were selected using predetermined in- and exclusion criteria. Items with similar content were clustered into domains based on type of activity. Results Thirty-one unique questionnaires containing at least one BADL and/or IADL item were identified; 21 and 29 questionnaires containing ≥ 1 BADL or IADL item, respectively. The percentage of ADL items in these questionnaires ranged from 4 to 100%. Only two questionnaires were specifically developed to measure BADL (Barthel Index and Katz-ADL) and two specifically for IADL (Lawton-Brody IADL and preliminary IADL-BN). Content clustering revealed that IADL had a larger variation in content (31 domains, e.g. work or leisure time activities) compared to BADL (15 domains, e.g. mobility or bathing/washing). Conclusion Thirty-one questionnaires previously used in brain tumor studies contained items on BADL and/or IADL and covered a wide range of content, in particular for IADL. It is currently unclear which BADL/IADL are most relevant for brain tumor patients, and this should therefore be evaluated. Next, existing questionnaires could be adapted or validated, or new measures can be developed to meet these needs. Electronic supplementary material The online version of this article (10.1007/s11060-019-03136-9) contains supplementary material, which is available to authorized users.