Community Is Top Unmet Psychosocial Need of Adults With Early-Onset Parkinson Disease

The top unmet psychosocial need of patients with early-onset Parkinson disease is for a “community more like me,” according to study results published online ahead of print in Parkinsonism & Related Disorders.

“Early-onset Parkinson disease affects people in the prime of their lives, typically between 21 and 50 years of age, which results in a variety of challenges that are unique compared to those diagnosed later in life,” wrote corresponding author Bradley McDaniels, PhD, of the University of North Texas, Denton, Texas, and coauthors. “A better understanding of the unmet needs of this population is critical to delivering bespoke care and improving their quality of life.”

The study included a cross-sectional sample of 198 adults with early-onset Parkinson disease who were surveyed about their unmet psychosocial needs. 

Nearly two-thirds of participants overall expressed a need for a “community more like me,” according to the study. Other major unmet needs were more information on Parkinson disease, which was cited by 48% of respondents; information about how Parkinson disease symptoms will progress, cited by 47%; help with mental health issues, cited by 34.8%, and help with employment issues, cited by 33.8%.

Among men, the most cited unmet need was help with employment issues, selected by 50.5%, the study found. Among women, 72.3% desired a “community more like me,” making it their most common need. Meanwhile, 47% of respondents who were Hispanic/Latino said their biggest unmet need was more information on Parkinson disease.

“Although the number of people living with early-onset Parkinson disease is considerably smaller than those with conventional age at onset, the potential impact to quality of life in this population remains tremendous,” researchers advised.

Reference: 

McDaniels B, Subramanian I, Kurian S, Chitnis S. Early-onset Parkinson’s disease: an assessment of unmet psychosocial needs. Parkinsonism Relat Disord. Published online April 6, 2023. doi: 10.1016/j.parkreldis.2023.105395