Does a novel digital physical activity intervention delivered via the Kidney BEAM platform improve health-related quality of life in people living with polycystic kidney disease? A mixed methods randomised controlled trial

Abstract

Background: In people living with polycystic kidney disease (PKD), physical inactivity may contribute to poor health-related quality of life (HRQoL). To date, no research has elucidated the impact of a PKD-specific physical activity programme on HRQoL and physical health. This sub-study of the Kidney BEAM Trial evaluated the impact of a PKD-specific 12-week educational and physical activity digital health intervention for people living with PKD.

Methods: This study was a mixed-methods, single-blind, randomised waitlist-controlled trial. Sixty adults with a diagnosis of PKD, were randomised 1:1 to the intervention or a wait-list control group. Primary outcome was difference in the Kidney Disease QoL Short Form 1.3 Mental Component Summary (KDQoL MCS) between baseline and 12 weeks. Six participants completed individualised semi-structured interviews.

Results: All 60 individuals (mean 53 years, 37% male) were included in the intention-to-treat analysis. At 12 weeks, there was a significant difference in mean adjusted change in KDQoL MCS score between the intervention group and waitlist control (4.2 [95% confidence interval, CI: 1.0–7.4] arbitrary units [AU], p = 0.012). Significant between-group differences in KDQoL sub-scales; burden of kidney disease (p = 0.034), emotional wellbeing (p = 0.001), and energy/fatigue (p = 0.001) were also achieved. There was no significant between-group difference in KDQoL PCS scores (p = 0.505). Per protocol analyses revealed significant between group differences in the PAM-13 patient activation score (p = 0.010) and body mass (p = 0.027). Mixed-methods analyses revealed key influences of the programme, including opportunities for peer support and to build on new skills and knowledge, as well as the empowerment and self-management.

Conclusion: A PKD-specific digital health educational and physical activity intervention is acceptable and has the potential to improve HRQoL. Further research is needed to better understand how specific education and lifestyle management may help to support self-management behaviour.