Progressive supranuclear palsy and corticobasal syndrome: cross-sectional study of palliative care needs.

OBJECTIVES

Assess the palliative care needs of patients with progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS), focusing on symptom burden, quality of life, caregiver strain and future planning.

METHODS

A cross-sectional survey incorporating Integrated Palliative Outcome Scale-Neuro 24 (symptom assessment), Short Form 36 Health Survey (quality of life), an advance care planning survey and a validated caregiver quality of life questionnaire.

RESULTS

19 participants with a diagnosis of PSP or CBS, and 17 caregivers were included in the study, recruited from the Leinster Tauopathy Epidemiological Study.Most participants were male (74%) with a mean age of 72 and moderate to advanced disease (Hoehn and Yahr score: 3.6). Over half reported fatigue, urinary issues, pain, swallowing and communication difficulties, with falls and mobility problems being particularly common. Quality of life was significantly impaired, particularly in physical functioning and general health.Over 75% wanted earlier and practical information about their condition, more than 25% were hesitant to engage in conversations about prognosis and EOL care.Caregivers experienced high levels of burden, fatigue (89%), physical stress (82%), low mood (76%), neglect of personal health (54%) and loneliness (53%), highlighting the considerable physical and emotional challenges encountered.

CONCLUSION

Understanding the complex symptoms and needs of this vulnerable population is key to effectively allocating resources, shaping integrated neurology and palliative care services, and ultimately improving quality of life for those living with these conditions.