The Validation of Questionnaire on End-of-Life Care Knowledge, Perceptions, and Preferences among End-Stage Renal Disease Patients on Hemodialysis

INTRODUCTION: End-of-life care issues for end-stage renal disease (ESRD) patients are still not fully highlighted in trials and clinical practice. Due to the inadequacy, exploring patients' knowledge, perceptions, and preferences is essential to improve the delivery of care. This was performed using questionnaires which have been a widely useful tool in medical researches. Up to date, there was no published, validated questionnaire developed in Malaysia for such purposes yet. OBJECTIVE: This study aimed to develop and validate the questionnaire on end-of-life care knowledge, perceptions, and preferences among hemodialysis (HD) patients. SUBJECT AND METHODS: A cross-sectional study was conducted among 92 HD patients from 14 centers. It involved four phases including (i) developing the questionnaire and pretesting, (ii) improving and editing and redistribution to respondents for the pilot study, (iii) factor analysis (FA), and (iv) internal consistency reliability testing. RESULTS: The result of FA with varimax rotation performed identified three domains for the 41 items, with 10–20 items in each domain. All the 41 analyzed items had a good factor loading of more than 0.4 with the lowest value of 0.421 and were nicely fit into three respective domains: knowledge, perceptions, and preferences. Internal consistency reliability analysis Cronbach's α values were between 0.5 and 0.7 for all domains, higher than the level set for this study (0.5). CONCLUSION: The questionnaire was successfully validated and considered a useful tool in describing ESRD patients' end-of-life care knowledge, perceptions, and preferences.