Objective: To describe and assess factors associated with health related quality of life (HRQoL) in late stage Parkinson’s disease (PD), with a special focus on health care factors.

Background: In the late and most severe stage of PD, both motor and non-motor symptoms (NMS) are pronounced and the patients become dependent on help in activities of daily living (ADL). Consequently, there is an increasing demand on health and social care resources. Increased knowledge on factors associated with HRQoL could serve as an important base for optimizing health and social care for these severely afflicted patients.

Method: The Care of Late Stage Parkinsonism (CLaSP) project is the so far largest study on late stage PD, defined as Hoehn and Yahr stages IV and V in ”on” and/or having a substantial need of help with ADL; Schwab and England Scale ≤ 50%. Participants were recruited in six European countries (the UK, Germany, the Netherlands, Portugal, France and Sweden), at leading movement disorder clinics, with the goal to establish a large cohort of patients. At baseline 692 patients and 470 informal caregivers were included. HRQoL was assessed with the PDQ-8 and the DEMQoL-Proxy in patients with dementia (MMSE < 18). Factors potentially associated with HRQoL were assessed and (for the PDQ-8) entered into multivariable linear regression analyses controlled for age, gender, disease duration and disease severity.

Results: The median age was 77 years; the median disease duration was 14 years; 54% were male. The majority had a partner (66%); 72% lived in ordinary housing. The median UPDRS III score was 47; the median NMSS score was 102; the median MMSE score was 24 and the median GDS-15 score was 6. In the simple linear regression analyses, HRQoL was positively associated with independence in ADL, better motor function, fewer NMS, better cognition, less depressive symptoms and contact with a PD-nurse during the past three months. For patients with dementia; having a partner, fewer NMS and hospital admittance during the past three months were positively associated with HRQoL. The multivariable analyses identified better motor function, fewer NMS and less depressive symptoms as positively associated with HRQoL.

Conclusion: The results indicate that optimizing treatment for motor and NMS, including depressive symptoms, could improve HRQoL for late stage PD patients. PD specific health care resources are likely important in providing this.

« Back to MDS Virtual Congress 2020

MDS Abstracts - https://www.mdsabstracts.org/abstract/health-care-provision-and-health-related-quality-of-life-in-late-stage-parkinsons-disease/