Quality of life in caregivers compared with dialysis recipients: The Co-ACTIVE sub-study of the ACTIVE dialysis trial

Nephrology (Carlton). 2019 Oct;24(10):1056-1063. doi: 10.1111/nep.13530. Epub 2019 Apr 29.


Aim: To compare quality of life (QOL) of caregivers of dialysis patients with the cared for patients and population norms.

Methods: The ACTIVE Dialysis study randomized participants to extended (median 24 h/week) or standard (median 12 h/week) haemodialysis hours for 12 months. A subgroup of participants and their nominated caregivers completed QOL questionnaires including the EuroQOL-5 Dimension-3 Level (EQ5D-3 L), short form-36 (SF-36, also allowing estimation of the SF-6D), as well as a bespoke questionnaire and the personal wellbeing index (PWI). Caregiver QOL was compared with dialysis patient QOL and predictors of caregiver QOL were determined using multivariable regression.

Results: There were 54 patients and caregiver pairs, predominantly from China. Caregivers mean (SD) age was 53.4 (11.3) years, 60% were female, 71% cared for their spouse/partner, and 36% were educated to university level. Caregivers had better physical but similar mental QOL compared with dialysis patients (mean SF-36 physical component summary: 46.9 ± 8.7 vs 40.4 ± 10.2, P < 0.001; mental component summary: 47.8 ± 9.7 vs 49.6 ± 12.0, P = 0.84). Health utility measured with EQ5D-3 L was not significantly different between caregivers and dialysis patients (mean 0.869 ± 0.185 vs 0.798 ± 0.227, P = 0.083). Caregiver PWI was 43.7 ± 15.5, significantly lower than the Chinese population norm (68.2 ± 14.2, P < 0.001). Higher physical and mental QOL among caregivers was predicted by university education but not age, gender or daily hours caring.

Conclusion: Caregivers have higher physical and equivalent mental QOL to dialysis patients but poorer personal well-being than the Chinese population. University education predicts better QOL and may be a surrogate for socioeconomic or other factors. (NCT00649298).

Keywords: A clinical trial of intensive dialysis; caregiver; extended dialysis; haemodialysis; quality of life.

Publication types

  • Randomized Controlled Trial

MeSH terms

  • Caregivers* / psychology
  • Caregivers* / statistics & numerical data
  • China / epidemiology
  • Consumer Behavior
  • Female
  • Humans
  • Karnofsky Performance Status
  • Male
  • Middle Aged
  • Patient Acceptance of Health Care / statistics & numerical data
  • Quality of Life*
  • Renal Dialysis* / methods
  • Renal Dialysis* / psychology
  • Renal Dialysis* / statistics & numerical data
  • Renal Insufficiency, Chronic* / epidemiology
  • Renal Insufficiency, Chronic* / psychology
  • Renal Insufficiency, Chronic* / therapy
  • Sickness Impact Profile
  • Socioeconomic Factors

Associated data

  • ClinicalTrials.gov/NCT00649298