Quality of life improved for patients after starting dialysis but is impaired, initially, for their partners: a multi-centre, longitudinal study

Background Quality of life (QOL) is important to patients with end stage renal disease and their partners. Despite the first 12 weeks being a critical time in the treatment pathway, limited research exists which examines how the transition onto dialysis impacts QOL. In this study we measured QOL in patients and their partners at pre-dialysis and over the first 12 weeks on dialysis to investigate QOL during this crucial period. Methods Patients and their partners, recruited from 10 renal units in England, completed questionnaires at pre-dialysis ( n = 166 participants, 83 couples), 6 weeks ( n = 90 participants, 45 couples) and 12 weeks ( n = 78, 39 couples) after starting dialysis. On each occasion participants completed a QOL questionnaire (WHOQOL-BREF). Multilevel modelling accommodated the nested structure of couples with repeated measures within participants. Three-level random intercept models estimated changes in WHOQOL general QOL and its four domains (Physical, Psychological, Social and Environment). Two-level random intercept models assessed the relationship between baseline clinical and socio-demographic variables with changes in general QOL. Results Patients reported positive changes in general QOL from pre-dialysis to 6 weeks (β = 0.42, p < 0.001, 95% CI 0.19, 0.65) and from pre-dialysis to 12 weeks (β = 0.47, p < 0.001, 95% CI 0.24, 0.71). Partners’ general QOL decreased significantly from pre-dialysis to 6 weeks (β = − 0.24, p = 0.04, 95% CI -0.47, − 0.01) but returned to its original level at 12 weeks. Patients reported improvements in the physical domain between pre-dialysis and 12 weeks (β = 6.56, p < 0.004, 95% CI 2.10, 11.03). No other domains changed significantly in patients or partners. Only in patients were there significant associations between moderator variables and general QOL. High comorbidity risk level and diabetes were associated with poorer QOL at pre-dialysis whereas being female and having an arteriovenous fistula were linked with improvements in general QOL. Conclusions Patients reported significant improvements in their general and physical QOL after starting dialysis. Partners’ general QOL worsened after patients started dialysis but improved by 12 weeks. Both patients and partners may benefit from additional educational and counselling services in the lead up to, and immediately after starting dialysis, which could facilitate the transition onto dialysis and improve QOL in both. Study registration This study was adopted on the NIHR Clinical Research Network (UK). The details of this study are registered on the Research Registry website ( www.researchregistry.com ). The identifier for this study is researchregistry2574.