THE BURDEN OF PROGRESSIVE SUPRANUCLEAR PALSY AND CORTICOBASAL DEGENERATION: FINDINGS FROM A PSPA PATIENT AND CAREGIVER SURVEY IN THE UNITED KINGDOM
Author(s)
Megan Hodgson, MSc, Mark Jackson, BA, Helen Chapman, BA, Carol Amirghiasvand, -, Rebecca Packwood, BA, James Cusack, PhD.
PSPA, Milton Keynes, United Kingdom.
PSPA, Milton Keynes, United Kingdom.
OBJECTIVES: Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are rare, progressive neurodegenerative disorders associated with substantial disability and care needs. Evidence describing their real-world impact remains limited. This survey aimed to characterize the diagnostic journey, humanistic burden, socioeconomic impact, healthcare experiences, and caregiver burden associated with PSP and CBD in the UK.
METHODS: A cross-sectional survey was conducted by the PSP Association (PSPA) in 2025 among people living with PSP or CBD and their caregivers. The survey was distributed to ~2,400 households across the UK. Respondents consented to the anonymous use of their data. Descriptive analyses were performed using survey responses.
RESULTS: A total of 650 responses were received, with 90% from England. Diagnostic delays were common. Only 9% of respondents reported receiving a diagnosis within six months of symptom onset, while 41% it took longer than two years. Furthermore, 35% reported seeking private medical care to facilitate diagnosis. Initial misdiagnosis was frequent, most commonly as Parkinson’s disease or another neurological condition. The burden of PSP/CBD extended well beyond diagnosis. More than 65% of respondents reported that the disease negatively affected their mood or mental health, while 90% reported loss of independence affecting daily life. Overall, 58% described every day as challenging. Financial consequences of PSP & CBD were evident, with 65% experiencing new costs and 26% finding it harder to manage their finances/budget. 30% of respondents either left work or took retirement due to their condition. Many respondents also reported challenges accessing support services and navigating health and social care systems.
CONCLUSIONS: PSP and CBD impose a substantial multidimensional burden on patients and caregivers in the UK, extending beyond physical disability to include loss of independence, mental health impact, socioeconomic consequences, and challenges navigating healthcare services. This survey has been funded by Ferrer.
METHODS: A cross-sectional survey was conducted by the PSP Association (PSPA) in 2025 among people living with PSP or CBD and their caregivers. The survey was distributed to ~2,400 households across the UK. Respondents consented to the anonymous use of their data. Descriptive analyses were performed using survey responses.
RESULTS: A total of 650 responses were received, with 90% from England. Diagnostic delays were common. Only 9% of respondents reported receiving a diagnosis within six months of symptom onset, while 41% it took longer than two years. Furthermore, 35% reported seeking private medical care to facilitate diagnosis. Initial misdiagnosis was frequent, most commonly as Parkinson’s disease or another neurological condition. The burden of PSP/CBD extended well beyond diagnosis. More than 65% of respondents reported that the disease negatively affected their mood or mental health, while 90% reported loss of independence affecting daily life. Overall, 58% described every day as challenging. Financial consequences of PSP & CBD were evident, with 65% experiencing new costs and 26% finding it harder to manage their finances/budget. 30% of respondents either left work or took retirement due to their condition. Many respondents also reported challenges accessing support services and navigating health and social care systems.
CONCLUSIONS: PSP and CBD impose a substantial multidimensional burden on patients and caregivers in the UK, extending beyond physical disability to include loss of independence, mental health impact, socioeconomic consequences, and challenges navigating healthcare services. This survey has been funded by Ferrer.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
HSD61
Topic
Economic Evaluation, Health Service Delivery & Process of Care, Patient-Centered Research
Disease
Neurological Disorders, Rare & Orphan Diseases