OBJECTIVES: Progressive supranuclear palsy (PSP) is a rare neurodegenerative disease, with symptoms affecting balance, movement, vision, speech and swallowing. With progression, patients become dependent on various healthcare services. This study aims to assess the relationship between time since PSP symptom onset and healthcare resource utilization (HCRU).

METHODS: Data from the Adelphi PSP Disease Specific Programme, a point-in-time study of neurologists and their PSP patients in the USA, France, Germany, Italy, Spain and the UK, were collected from July-November 2018. Neurologists reported patients’ date of symptom onset, nursing/care home status, number of PSP-related hospitalizations, use of mobility/supportive aids and devices, and home modifications. Logistic, negative binomial regressions were used to model the association between reported date of symptom onset and the above outcomes. Odds ratios and incidence ratios were produced for yearly increases in time from symptom onset. Analyses were not adjusted for confounding factors.

RESULTS: 203 neurologists recorded data on 892 PSP patients, of whom 754 had a recorded date of symptom onset. Regression analysis indicated significant associations between time since symptom onset and the number of hospitalizations, the use of mobility/supportive aids and devices, home modifications made, as well as the likelihood of living in a nursing home. The average duration from symptom onset was 3.2 years. Analysis showed that for each year following symptom onset, the odds of using mobility/supportive aids increased by 66.4%, feeding tube by 30.4%, making home modifications by 31.7%, and living in a nursing/care home by 24.2%; the number of hospitalizations increased by 10.0% per year.

CONCLUSIONS: This study provides real-world evidence on the relationship between PSP and HCRU. As time from symptom onset increased, PSP patients were rapidly utilizing healthcare services, incurring greater costs both to the healthcare system and patient themselves. More research is needed to quantify the cost of these services.