Abstract Introduction Parkinson’s disease (PD) affects 1/50 people over 65 years, with complex health and social care needs and difficulty accessing timely support. We co-designed and tested a self-management toolkit for people with PD and their carers (UCL Live Well with Parkinson’s), to improve health outcomes and healthcare needs. The toolkit contains information about symptoms, treatment, optimising wellbeing, and practical advice. The sub-sections, personalised with the help of a supporter, cover information on health and support, allow symptom reviewing/tracking, and to work towards health priorities. Method The clinical and cost-effectiveness were tested in a single-blind RCT in England. We randomised community-dwelling participants with PD 1:1 to the intervention or treatment-as-usual. The primary outcome was health-related quality of life (PDQ-39) at 12-months. Outcomes were analysed using linear mixed models, controlling for baseline. Results We recruited 346 participants between January 2022–July 2023 (mean age 69 (SD 9) years, 159 (46%) women, 321 (93%) white). Data collection was completed in August 2024 with 88% retention at 12-months. Small, but not statistically significant differences in PDQ-39 were seen for intervention participants (−1.03(−3.03 to 0.97); p = 0.31). There were significant differences in favour of the intervention arm in symptom changes on the MDS-UPDRS part I and II at 6- and 12-months (−2.19(−3.95 to −0.43) and − 2.61(−4.58 to −0.64)). We found significant differences in psychological distress (GHQ-12) (−0.87(−1.71 to −0.03)) and overall health status (EQ-5D-5L VAS) (3.87(0.32 to 7.41)) at 6-months. At 12-months, intervention group participants had significantly lower health and social care costs (mean incremental cost saving per participant -£1459(−£2903 to -£16)), inclusive of the average per-participant intervention costs of £284. There was no difference in 12-month QALYs (mean incremental QALYs 0.02(−0.01 to 0.04)) and hence dominates treatment-as-usual. Conclusion Our self-management tool has potential to improve PD symptoms and support cost-effective management of patients with PD.
Walters et al. (Sun,) studied this question.