P03.01 Evaluation of the relevance of an Instrumental Activities of Daily Living (IADL) questionnaire developed for dementia patients in glioma patients
Authors: Q. Oort, L. Dirven, W. Meijer, S. A. M. Sikkes, B. M. J. Uitdehaag, J. C. Reijneveld, M. J. B. Taphoorn
Journal: Neuro-Oncology (2016)

Obtaining information on everyday functioning of glioma patients is essential. Instrumental Activities of Daily Living (IADL) are cognitively complex daily activities, such as food preparation and shopping. IADL may be negatively influenced by cognitive decline, characteristic for glioma patients. There is no gold standard to measure IADL in glioma patients. However, both dementia and glioma patients exhibit cognitive decline during the course of their disease and might experience similar problems with IADL. To evaluate if the Amsterdam IADL questionnaire ® (A-IADL-Q), a 70-item questionnaire developed and validated to measure IADL in early dementia patients, is also relevant for glioma patients. The evaluation consisted of 3 steps. In the first step, 6 neuro-oncology health care professionals (HCP) and 10 glioma patient-proxy dyads were asked to evaluate the A-IADL-Q items. HCPs had to indicate if the activities were (a) considered to be IADL, (b) affected in glioma patients and (c) clearly formulated. Patients and their proxies only needed to answer the latter two questions. In step 2, the 6 HCPs and 6 other patient-proxy dyads were asked to generate relevant activities not covered by the A-IADL-Q. To do so, in-depth interviews were conducted. Predetermined decision rules defined which items to retain in step 1 and to add in step 2. Activities who met all three criteria (a, b & c) were retained. Activities that were considered IADL and affected, but unclearly formulated, were rephrased. Frequent newly generated activities were added to the existing list of items. In step 3, 6 new patient-proxy dyads vocalized their thoughts on the list of items constructed from the previous steps. Any residual ambiguities or repetitiveness identified during the cognitive debriefing would lead to item adjustments. In step 1, HCPs considered all 70 items as IADL if 3 items were to be rephrased slightly. However, HCPs considered only 63% of the activities as likely to be affected in glioma patients and just half (51%) as clearly formulated. According to the patient-proxy dyads, only 20–21% of the activities were affected in glioma patients, and 82–93% was considered clear. In accordance with the decision rules, a total of 28 items were retained. Fourteen new (including social and work related) items generated in step 2 were added. In step 3, the 42 items were presented to the patient-proxy dyads. Based on their input, several alterations were made resulting in a provisional list of 37 items. Evaluation of the dementia-specific A-IADL-Q suggests that this questionnaire is not appropriate for use in glioma patients; several items were not relevant and others missing. Glioma patients might have a unique set of IADL problems. Clearly, a new IADL questionnaire specifically for these patients is needed. Currently, this questionnaire is being developed at the EORTC QOL Group.