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

Abstract

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.

The stay strong app as a self-management tool for first nations people with chronic kidney disease: a qualitative study

“…It was deemed likely to influence wellbeing positively and hence a carefully worded question allowed participant perspectives of ‘access’ and ‘home’ to be recorded, recognising that some people identified home as their remote community whilst others may identify it as the urban setting in which they were interviewed. This research team decision was similarly supported by reported First Nations people’s experience [ 59 ].…”

“…The study sought to test effectiveness of a wellbeing intervention and aimed to minimise such confounding effects where possible. That there is such a change following commencement of haemodialysis is supported by reports from First Nations people in rural Australia of a journey from ‘shock’ to ‘acceptance’ and a ‘more positive attitude’ following commencement of haemodialysis [ 59 ]. This time line also accords with findings by Moore et al (2020) of initial worsening followed by improvement in Quality of Life (QoL)12 weeks after starting dialysis [ 60 ], while others have reported that QoL deteriorates as duration of dialysis increases [ 59 , 61 ].…”

Impact of health-related quality of life on survival after dialysis initiation: a prospective cohort study in Korea

“…Second, in this study, only the HRQOLs at 3 months after dialysis start were analyzed. Recently, Moore et al [ 53 ] reported that HRQOL improves during the 3 month transition period after dialysis start, especially in physical domain. Whether HRQOL at pre-dialysis or 3 months post-dialysis is more important for survival and whether HRQOL improvement can influence patient mortality are important questions.…”

Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ)

“…Data obtained at baseline (pre-dialysis) in a longitudinal study [ 11 ] were used to evaluate the performance of the individual items, internal consistency, item correlations and relatedness of the domains. This study was conducted in 10 renal research units across England.…”

“…Participants were recruited from the renal registries of the nephrology units from November 2017 to September 2018. The inclusion and exclusion criteria have been previously reported [ 11 ]. Briefly, patients were eligible to participate if: (1) they were in the care of a nephrologist for ESRD, (2) their clinical factors indicated that they were likely to start dialysis in the next 2 months, (3) they were planning to receive a form of out-patient HD or PD for the management of ESRD, (4) they were in a spousal-type relationship with someone they considered their “partner”, and 5) they were 18 years or older.…”