Characterizing daily life experience of patients on maintenance dialysis

Background. Despite growing literature of the dialysis patients' high burden of illness and a compromised quality of life, little is known about their daily life experiences. Methods. A cross-sectional study using the day reconstruction method, an experience sampling method, was used. Seventy-one dialysis patients recruited from three dialysis centers systematically reconstructed their activities and experiences of the preceding day. Time spent on their activities, settings and associated emotions were assessed to compute U-Index scores (the percentage of time a person spent in an unpleasant or undesirable state). Patients also completed the Illness Effects Questionnaire-Self-Report (IEQ-S) and the Short-Form Health Survey-36 v2 (SF-36v2). Results. Patients spent similar to 6 h of their day (excluding sleep hours) in an unpleasant or undesirable state (U-Index 34.45 +/- 29.26). U-Index scores did not differ by race, age, sex or years on dialysis and were moderately associated with IEQ-S scores (r - 0.43, P <= 0.001) and weakly associated with SF-36v2 physical component scores (r = - 0.34, P = 0.003). U-Index scores differed significantly between dialysis days and non-dialysis days for hemodialysis patients (P = 0.012). Those who had depression or used antidepressants and reported income not meeting basic needs showed significantly higher U-Index scores than their counterparts (P < 0.05). Conclusions. The findings may assist clinicians to better understand the daily activities and burdens experienced by dialysis patients and suggest areas for future research and clinical considerations to improve the quality of their lives.