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The decision to start dialysis is a pivotal one, with significant life changes and challenges. Some may look back on their journey and experience regret, particularly if they had to make difficult trade-offs or sacrifices including cost and income loss in their daily lives. These feelings can be compounded by the realisation that dialysis while life-sustaining, is not a cure for their underlying kidney condition. The constraints placed on routines, dietary choices, and lifestyle can lead to introspection and contemplation of what might have been. Regret is not universal though, some patients find solace in the fact that dialysis has allowed them to continue living and spending time with loved ones. Limited literature exists on regret in dialysis patients in low- or middle-income countries.
A cross-sectional survey was carried out on a total of 857 patients in Pakistan and Bangladesh. A 22-item questionnaire on age, pre-dialysis nephrology care, present treatment, dialysis initiation, dialysis access, decisional regret, carer burden, religious motivation, and quality of life was administered to adult patients receiving maintenance dialysis. Validated scales for estimating decisional regret and quality of life were utilised. To investigate factors associated with regret, additional inquiries were made regarding the mode of presentation, type of dialysis, access, time since dialysis initiation, disease literacy, and quality of life.
Surveys were administered in person at the patients' usual dialysis sessions between June to October 2023. Responses were captured electronically via Google Forms and SPSS (v.23) was used to analyse the data.
857 patients were included in the study, with just over half of the patients coming from Bangladesh (55%). 52% were male and the commonest age groups were between 51- 65 years (42.1%), and 36 - 50 years (30.2%). 83.9% were married, and 77.4% of the population had education below or up till high school. 62.7% of patients had not themselves made the decision to initiate dialysis.
Dialysis regret in this cohort was investigated by the Decision Regret Scale. There was a significant association between responses to "It was the right decision" and "I regret the choice that was made." A contingency table showed a symmetric pattern in the sense that respondents who strongly agreed with one statement (e.g., "It was the right decision") also strongly agreed with the other statement ("I regret the choice that was made") implying a strong association between the two questions, with a significant proportion of respondents feeling consistently about both aspects.
Limited literature exists pertaining to the psychosocial aspects associated with dialysis, particularly regret. This first-of-its-kind study focuses on dialysis regret in low- or middle-income countries, and takes certain demographic variables into account, with hopes of developing a supportive care program in the future. Our work provides valuable insights into how individuals perceive their decisions in terms of satisfaction and regret. It also highlights the importance of understanding the factors that contribute to these sentiments and whether there are patterns or differences among different groups of respondents.