What do people with parkinsonism consider important and want to achieve?

Objective:
To describe pilot data from goal setting interviews in people with Parkinsonism to understand what they consider important and want to achieve.

Background:
Parkinson’s disease (PD) and related conditions cause a wide spectrum of symptoms, meaning each individual has a unique experience further diversified by cultural, socioeconomic and demographic influences. New patient-centered models of care aim to better address patients’ needs which requires an understanding of personal priorities of people with PD[1]. Existing work has focused on priorities for future research.[2] As well as guiding the design and implementation of new care models, understanding priorities can also inform the development of meaningful outcome measures for PD research.

Method:
Participants with parkinsonism are being recruited to the PRIME-Parkinson randomised controlled trial aiming to evaluate a novel multi-component model of care. The Bangor Goal Setting Interview (BGSI) is used at baseline to set three to five goals. A category is assigned and goals are labelled as aspirational or maintenance. Each goal is given an importance score on a standardised scale (1-10). Descriptive analysis of patient characteristics and baseline goal data.

Results:
BGSI has been completed in 85 participants (mean age is 75 years (±7), 24 are female (28.2%)). The most common diagnosis was idiopathic Parkinson’s disease (n=74, 86.2%). The most common disease stage was Hoehn and Yahr stage 2 (n=34, 37.2%) and stage 3 (n=24, 30.8%) but included those from stage 1 (n=6, 7.7%), stage 4 (n=11, 14.1%) and stage 5 (n=3, 3.9%). All participants were able to identify goals (3 goals n=62 (72.9%), 4 goals n=15 (17.6%), 5 goals n=8 (9.4%)). The most common category of goal was “physical activity” (n=99, 34.7%) followed by “participation and enjoyment of hobbies and activities” (n=81, 28.4%) and “social contacts and interacting with others” (n=42, 14.7%). Aspirational goals (n=168, 59%) were more common than maintenance goals (n=117, 41.1%). The median importance of goals was 9 (IQR 8-10).

Conclusion:
We have shown that goal setting is feasible in a representative sample of people with parkinsonism. Participants were able to identify goals of high personal importance which fell within three predominant categories. Further research should examine how goal content differs across the disease spectrum and with personal characteristics.