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The study has now completed both recruitment and analysis, having recruited 692 participants from across 6 countries, 123 of whom were from the UK. The findings from the study can be viewed in the publications that are available below. The findings suggest areas that could be improved upon in current treatments, particularly ways in improving quality of life for example regular access to seeing a Parkinson’s nurse and other specialists within the multidisciplinary team. The papers also identify the particular symptoms or situations that healthcare professionals should be aware of as signs of significant deterioration. Findings also explore the burden on those spouses and family-members who care for those with Parkinson’s .
- Balzer-Geldsetzer et al. Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study. BMC Neurology (2018) 18:185
- Hommel et al. Optimizing Treatment in Undertreated Late-Stage Parkinsonism: A Pragmatic Randomized Trial. Journal of Parkinson's Disease, vol. 10, no. 3, pp. 1171-1184, 2020.
- Hommel et al. The Prevalence and Determinants of Neuropsychiatric Symptoms in Late-Stage Parkinsonism. MOVEMENT DISORDERS CLINICAL PRACTICE 2020; 7(5): 531–542.
- Hosking et al. Characteristics of Patients with Late-Stage Parkinsonism Who are Nursing Home Residents Compared with those Living at Home. Journal of the American Medical Directors Association, Volume 22, Issue 2, 2021, Pages 440-445.e2
- Kalampokini et al. Caregiver Burden in Late-Stage Parkinsonism and Its Associations. Journal of Geriatric Psychiatry and Neurology. October 2020.
- Read J, et al. Experiences of health services and unmet care needs of people with late-stage Parkinson’s in England: A qualitative study. PLoS ONE 14(12) 2019
- Rosqvist et al. Perspectives on Care for Late-Stage Parkinson’s Disease. Parkinson’s Disease, vol. 2021, Article ID 9475026, 11 pages, 2021.
- Rosqvist et al Factors Associated with Health-Related Quality of Life in Late-Stage Parkinson's Disease. MOVEMENT DISORDERS CLINICAL PRACTICE 2021; 8(4): 563–570
- Schrag et al. The late stage of Parkinson's –results of a large multinational study on motor and non-motor complications. Parkinsonism & Related Disorders, June 2020.