Objective: To quantify the impact of varying severity levels on caregivers’ burden and health-related quality of life (HRQoL).

Background: PSP is a progressive disease. Patients often require a caregiver, usually a family member or a friend, to help them with activities of daily living. Caring for a loved one with PSP has potential impact on HRQoLof the caregiver.

Method: Data were drawn from the Adelphi PSP Disease Specific Programme, a cross sectional study of neurologists and their PSP patients in the USA, France, Germany, Italy, Spain & UK. Data were collected from July to November 2018. PSP severity was reported by neurologists. Data were also collected from primary caregivers accompanying the patients to their consultations, including their experience caring for the patient and its impact on their life. HRQoL was reported via The Parkinsonism Carers QoL (PQoL carer) scale. The score ranges from 0 to 100, with higher scores indicating lower HRQoL.

Results: The study included 203 neurologists completing records on 744 community-dwelling PSP patients. 81 caregivers for these patients completed the caregiver form.  Neurologists reported each patient’s severity, with 30% (225) considered mild, 51% (378) moderate and 19% (141) severe. As severity increased, patients had an increased need for care, with 27% (61) of mild, 67% (252) of moderate and 87% (122) of severe patients having a caregiver. Hours spent by caregivers, on average, were 34.6, 44.1 and 75.7 per week for mild, moderate and severe patients, respectively. Of the 81 caregivers who completed the form, 12% (10) were caring for mild, 60% (49) for moderate and 27% (22) for severe patients. None of the caregivers for mild patients had stopped or reduced their working hours to provide care. However, 16% (8) of moderate and 23% (5) of severe patients had. Caregiver QoL declined as severity increased, as shown by PQoL scores of 26.7, 37.5 and 54.4 for mild, moderate and severe patients, respectively.

Conclusion: As PSP severity increases, patients are more likely to need a caregiver and those caregivers are likely to spend more of their time caring for the patients. This impacts caregivers’ ability to work as well as their overall quality of life.

« Back to 2019 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/the-impact-of-progressive-supranuclear-palsy-psp-disease-severity-on-caregivers/