Objective: This cross-sectional study seeks to describe the symptomatology and health needs of a representative sample of people with parkinsonism, including those living with frailty, multimorbidity and cognitive impairment, who are often excluded.

Background: People with parkinsonism are a heterogeneous group who can experience a range of motor and non-motor symptoms over the course of the disease. The prevalence of Parkinson’s disease (PD) rises with age meaning that many individuals are also living with frailty and/or multimorbidity, which adds to the clinical complexity. Observational studies frequently exclude patients on the bases of age, comorbidities, cognitive impairment or inability to consent, which limits the generalisability of findings.  

Method: In this cross-sectional study, we are inviting people with parkinsonism, at a single U.K. centre, to complete questionnaires on a range of topics including quality of life and non-motor symptoms.  We have actively tried to recruit patients who are typically under-represented in research, such as care home residents, and have provided support to help them take part. For individuals lacking capacity to consent, we have approached a personal consultee so they can be included.

Results: We approached 1168 patients, of whom 542 have consented to the study. So far, 434 recruited patient participants have returned questionnaires (as of 23.02.22). This includes 28 patients who lacked capacity to consent to the study, so had a representative complete a bespoke questionnaire on their behalf. The mean age of patient participants was 76.3 years (SD 8.0, range 47-93 years), 285 (65.7%) were male. 376 (86.7%) had idiopathic PD, 8 (1.8%) PD dementia, 9 (2.1%) vascular parkinsonism and  33 (7.6%) an atypical parkinsonian syndrome. Median disease duration was 5 years (range <1- 41 years).  19 (4.4%) participants were resident in a care home and 8 (1.8%) in sheltered housing.  15 (3.5%) used device-aided therapy.

Conclusion: We have recruited a wider range of participants with parkinsonism, with older mean age than most previous studies, including care home residents. We believe our sample represents the wide spectrum of disease, including those who can be hard-to-reach. Our subsequent results should provide better “real world” health needs representing the clinical complexity and heterogeneity in the general parkinsonism population.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/capturing-the-complexity-of-patients-with-parkinsonism-baseline-characteristics-of-participants-in-the-prime-uk-cross-sectional-study/