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

INTRODUCTION

End-stage renal disease (ESRD) is defined as an irreversible decline in renal function which will be fatal in the absence of renal replacement therapy.[1] It is a life-limiting illness[2] and majority will undergo hemodialysis (HD) treatment to maintain lives.[3] However, the expected symptoms' improvement for ESRD patients was not well-documented in the literature.[4] Several studies have highlighted the high burden of physical and emotional symptoms among ESRD patients.[56]

Palliative care for ESRD patients integrates education, symptoms management, advance care planning, and psychological support, leading to the terminal phase of planning for the end of life.[7] It prioritizes the comfort and quality of life aligned with patients' preferences and goals.[8] It showed great benefits regardless of either dialysis or nondialytic pathways.[9] Surprisingly, the role of renal palliative care lags far behind other terminal illnesses. The inadequacies of end-of-life care in the patient management have also been described in many studies.[910] It is neither well known nor optimally implemented in the routine clinical practices in Malaysia, and research on the local practice is lacking.[11] Up to now, there was only one local, single-center study that investigated end-of-life care aspect demonstrating the low level of knowledge dissemination among patients.[11] Understanding their views including awareness, values, and preferences on the end-of-life care and its related issues is an important step to identify gaps between patients' preferences and clinical practice.

Questionnaires were widely used by researchers in understanding mass thinking. Due to its feasibility and low cost in data collection,[12] it is a readily accepted method, compared to the more invasive and long experimental study. Apart from its low cost and feasibility, its wide utilization in studies involving large number of patients was able to yield statistical analysis with bigger power compared to other methods.[13]

The development of a questionnaire that addresses end-of-life care attributable to ESRD is vital. The aim of the study is to develop and validate the questionnaire on end-of-life care knowledge, perceptions, and preferences among ESRD patients on HD.

SUBJECTS AND METHODS

RESULTS

A total of 92 patients completed the questionnaire. The validation process of the questionnaire included internal consistency and construct validity assessment. There were three domains, namely knowledge (B), perception (C), and preferences (D) with 41 items altogether.

DISCUSSION

Although the concept of end-of-life care for ESRD patients has been around for many years, it is lagging behind other terminal illnesses and was not thoroughly discussed in routine clinical practice.[1011] Thus, there is an urgent need to create a validated questionnaire. The questionnaire comprised four domains which were (i) patients' background and sociodemographic data, (ii) end-of-life care knowledge, (iii) end-of-life care perceptions, and (iv) end-of-life care preferences. These were adapted from a similar study conducted in Alberta, Canada, which had been validated. However, modifications were made in terms of items arrangements for each domain, wordings with Malay translation to fit the local population. Its purpose was to gain understanding in the local context and identify gaps in the current practice. Both clinicians and patients unusually have distinctive priorities and preference in viewing this subject. Therefore, establishing mutual understanding will yield a better outcome.

The three domains which undergone validation analysis were knowledge, perceptions, and preferences, containing 41 items. The items per domain ranged from 10 to 20 items. It underwent content validity by the respective experts on subject matters and face validity in which only a few reported little difficulties. No early termination or adverse effect was recorded. Focusing on the construct validity of the developed questionnaire, FA performed on the data collected shows that the number of factor solution was three. These findings supported the convergence and discriminant validity of the questionnaire as it fulfilled two out of three criteria on a number of factors which needed to be obtained, namely all factors obtained have eigenvalue of >1 (not shown) and number of factors were following the number of domain identified in the development of the questionnaire. In addition, all factors' loading values were more than 0.4 and items in each domain were inter-correlated within but not with items in other domain.

It can be concluded that this questionnaire has a satisfactory internal validity whereby all the items for knowledge, perception, and preference have Cronbach's α value of more than 0.5, the value set in this study. A higher value of Cronbach's α can be achieved by increasing the number of items in each domain as described by the previous researcher that items of <10 in a section are likely to yield α value of <0.7.[1217] The similar trend is observed in this study whereby preference domain has the highest of the value of 0.797, followed by perception and knowledge with the α values of 0.601 and 0.573, respectively. The latter two both have 10 and 11 items and produce about a relatively similar α value. As opposed to the preference domain which consists of 20 items, the α value obtained was comparably high.

CONCLUSION

This questionnaire was successfully validated and considered as a useful tool. This is the first successfully validated questionnaire for such purpose in Malaysia. Improvement will still be necessary from time to time to ensure its relevance in relation to the evolving disease patterns.