Knowledge and Perceptions on End-of-life Care among End-stage Renal Disease Patients on Hemodialysis.

The role of end-of-life care is fundamental for end-stage renal disease (ESRD) patients, who are known to have a high morbidity and mortality rate despite being on dialysis. This requires effective communication and shared decision-making. Thus, exploring patients' knowledge and perceptions is essential to improve the gaps in delivering end-of-life care. This study aimed to describe the knowledge and perceptions of end-of-life care among ESRD patients on hemodialysis (HD). This was a cross-sectional study involving 14 outpatient HD centers in Kuantan, Malaysia. Patients were recruited from March to June 2019. A validated questionnaire was delivered via interview-based surveys by the researcher or trained interviewers. The majority of the respondents had poor knowledge of the disease and end-of-life care. However, more than 70% of the respondents felt that it was important for them to be actively involved in medical decision-making, as well as being prepared and planning for death. End-of-life needs, which included management of symptoms and psychological, social, and spiritual support, were important to most respondents. Additionally, patients with higher educational backgrounds were observed to have higher scores for both knowledge and perceptions (P <0.05). The study found poor knowledge but acceptable perceptions among patients. This highlights the gaps in the current local approach in clinical practice to end-of-life care in ESRD.

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.