FTD Disorders Registry (FTDDR) disease impact survey: Understanding the lived experience of persons affected by frontotemporal degeneration (FTD), including those diagnosed, their families and caregivers. (December 2021) - Wheaton, Dianna KH
Abstract: Background: FTD is a group of rare brain diseases that cause myriad progressive changes to behavior, personality, language, and movement with onset typically before age 60. There are currently no treatments or cure. The FTDDR is a regulatory‐compliant, web‐based portal that functions as both a Contact Registry and Research Registry for persons affected by FTD to amplify the patient/family voice and facilitate research. The Disease Impact Survey was designed to characterize person‐centric perceptions of FTD disease manifestation and the impact to those diagnosed and others. Method: The 35‐question survey was administered online via the Research Registry to 672 participants (205 male; 467 female) between March 2017 and January 2021. Multiple‐choice style questions collected details about the diagnosis, symptoms, and daily life functionality. It also queried how the lives of people around diagnosed persons are affected. Result: Respondents were 19.5% FTD‐diagnosed persons, 40% biological family, 40% spouse/partner caregivers. Diagnosis was 54% bvFTD, 6% nfvPPA, 7% svPPA, 4% lvPPA, 9% PSP, 7% CBD/CBS, 4% FTD‐ALS, 2% other, and 6% indeterminate. The most common first symptom was personality change (27%), cognitive problem (25%), or language problem (18%). 78% of individuals waited for a second symptom before seeking a diagnosis. 52% required seeing 3 or more doctors before an FTD diagnosis was determined. 75% of FTD diagnosed persons were reported to be living at home. Assistance required with daily activities ranged from 30% for self‐reporting FTD persons versus 43% as reported by biological family/spouse/caregivers. Family and caregivers reported a range of negative impacts including altered role/relationships (84%), disrupted plans for the future (73%), and increased stress/negative health (73%). Conclusion: FTD is a devastating disease that hinders a person in the prime of life from performing basic mental and/or physical daily tasks, and in most cases changes the person's personality and behaviors. The Disease Impact Survey captures these elements from the lived experience and demonstrates that FTD not only affects the person diagnosed, but also family, friends, and caregivers.