Large Survey to Identify Unmet Needs of Underserved Parkinson’s Populations in US

The Parkinson’s Foundation is launching a large paper-based survey to identify gaps in existing research in traditionally underserved people with Parkinson’s disease by gathering patient-reported information about treatment and care, access, unmet needs, and outcomes.

The survey was developed by the foundation, together with researchers at the University of Pennsylvania and the University of Chicago, with the support of the Michael J. Fox Foundation.

Its design was shared in a scientific poster, “Measuring Unmet Need in Underserved Parkinson’s Populations (UPPs),” during the recent virtual 2020 International Congress of Parkinson’s Disease and Movement Disorders.

Underserved Parkinson’s Populations include racial and ethnic minorities, women, residents of rural areas, individuals older than 70, and those not seeing Parkinson’s specialists. When research is conducted in these specific patient populations, the focus is usually limited in scope.

“A deeper understanding of the healthcare needs and access barriers for underserved Parkinson’s populations can inform providers, institutions, organizations, and people with [Parkinson’s disease] about key issues and aid in developing programs, activities, and resources that best reach and serve these populations,” the researchers wrote.

The survey was scheduled to launch in the U.S. in April 2020, but was delayed due to the current COVID-19 pandemic. The foundation expects to release the results later this fall.

Designed to be self-administered, the survey will be sent via mail to 9,500 people with Parkinson’s disease (diagnosed after age 67) who meet the criteria for underserved populations and whose data will be obtained through a data sample attained through the Centers for Medicare & Medicaid Services Research Data Assistance Center and identified via Medicare claims.

Survey categories include all aspects of health, including the mental, social, and emotional aspects, of these underserved populations. The survey combines validated tools with newly developed questions on access to care, support, and information and experiences since the start of the pandemic.

The study will focus on core areas such as structural gaps in care (assessing desire, as compared to ability, to access care), personal activation and motivation (evaluating access to and use of Parkinson’s information), and existing support (understanding access to and use of social and care networks).

Researchers expect that the results of the survey will pinpoint differences, preferences, and the impact of access to care in these underserved populations.