Abstract
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.
Highlights
Traditional outcome measures used in clinical trials with brain tumor patients are overall and progression-free survival and tumor response on magnetic resonance imaging
ADL can be divided into two categories, basic activities of daily living (BADL) and instrumental activities of daily living (IADL)
health care professionals (HCP) evaluated the activities on three aspects; (I) can the activity be considered IADL using the proposed definition (=‘IADL are complex activities with little automated skills for which multiple cognitive processes are necessary’ [4]), (II) is the activity likely to be affected in glioma patients, and (III) is the item clearly defined and formulated? The inclusion criteria were as follows; ≥5/6 HCPs had to affirm that the activity was IADL, ≥4/6 HCPs had to recognize the activity as likely to be affected and ≥5/6 HCPs had to consider the item to be clearly formulated to be considered clear
Summary
Traditional outcome measures used in clinical trials with brain tumor patients are overall and progression-free survival and tumor response on magnetic resonance imaging. Even though the functional independence measure (FIM) [7], whether or not in combination with the functional assessment measure (FAM) [8], assesses problems in activities of daily living, it includes cognitive abilities, such as concentration and memory, and emotional status. There is no gold standard to measure IADL in brain tumor patients, a recently proxybased questionnaire was developed and validated to measure IADL problems in patients with early dementia [12]. The objective of this pilot study was to evaluate if the Amsterdam IADL Q uestionnaire© (A-IADL-Q) is applicable to glioma patients
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