Development of a questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumors: a pilot study

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.