Development and validation of a questionnaire to explore preferences of patients, family caregivers, and kidney care providers on advance care planning in an end-stage kidney disease setting

Abstract

Objectives. To develop and validate an English and Kannada version of the questionnaire to assess awareness and knowledge of advance care planning (ACP) among end-stage kidney disease (ESKD) patients, caregivers, and healthcare providers. Methods. The questionnaire was developed from the published literature on ACP use in ESKD setting after a literature search. An expert panel consisting of nephrologists, palliative medicine physicians, ESKD patients, and their family caregivers participated in the content validity of the questionnaire using the Delphi process. The study was conducted between August 2021 and July 2022 at a tertiary care hospital in India. A validated questionnaire was administered to eligible 30 ESKD patients, 30 caregivers, and 10 health care professionals. A retest was carried out 1 week after the first administration. Results. The content validity ratio of patient, caregiver, and health care professions questions ranged from 0.6 to 1 and Cronbach’s α value was 0.737 to 0.925. The intraclass correlation coefficient values for the test–retest of all three sections of this questionnaire varied from 0.879 to 0.972. Significance of results. The developed questionnaire is a reliable and valid method for assessing the preference and knowledge of ACP in ESKD patients, family caregivers, and kidney care providers both in English and Kannada.