It Is Personal: What People with Parkinson's Disease Say Matters Most for Quality of Life.

BACKGROUND

Little is known about what matters most for quality of life in people with Parkinson's disease and how much it varies between individuals.

OBJECTIVE

The goal was to define the relative impact of quality of life determinants in people with Parkinson's disease, including variation across individuals and by disease severity, gender, age, and ethnicity.

METHODS

Sixty-one factors potentially associated with quality of life in people with Parkinson's disease were identified from the literature and nominated by participants with Parkinson's disease. Forty-four participants then rated their degree of impact on quality of life from "a lot" to "not at all," and identified their "top 3 most important" factors.

RESULTS

At the individual level, determinants of utmost importance varied greatly, with 39 of 61 factors being reported at least once in the "top 3." There were 17 factors that at least 50% of the sample agreed affected quality of life "a lot," and only two were symptoms of the disease. Twelve (all positive experiences) retained at least 50% agreement across subgroups defined by disease severity, age, gender and ethnicity. Symptom-related factors of high importance varied markedly in mild disease subgroup in particular.

CONCLUSIONS

Factors that are not direct consequences of the disease, but may be highly personal and interfere with what one finds meaningful, emerged as highly relevant. Symptoms also greatly impacted quality of life for most individuals, but specific symptoms varied across individuals. Quality of life determinants in people with Parkinson's disease appear highly individualized, and currently used measurement tools with fixed items may not be optimal. © 2025 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. © 2025 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.