The Lived Experiences of People with Progressive Supranuclear Palsy and Their Caregivers.

Introduction: Progressive supranuclear palsy (PSP) is a neurodegenerative disorder initially characterised by disturbances in gait, balance and posture, with death occurring after several years of progressive physical and cognitive decline. This, along with a low index of suspicion, a high degree of diagnostic uncertainty and no approved treatment options, greatly impacts the lives of patients and caregivers. This research was conducted to (i) gain insight into the clinical and emotional journey of patients with PSP, (ii) assess experiences and perspectives, (iii) understand disease impact and (iv) identify key challenges and unmet needs.