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151 Improving diagnosis and care in progressive supranuclear palsy (PSP), corticobasal degeneration (CBD)
  1. Diane Swallow1,
  2. Donald Grosset2,
  3. Carl Counsell1
  1. 1Institute of Applied Health Sciences, University of Aberdeen
  2. 2Institute of Neurological Sciences, Queen Elizabeth University Hospital, Glasgow

Abstract

Background Misdiagnosis and delayed diagnosis are common in PSP/CBD. After diagnosis there is little evidence on multidisciplinary care access or on prognosis other than survival.

Aims (1) Describe and improve diagnostic pathways; (2) Validate and develop diagnostic tools; (3) Evaluate care quality from diagnosis to end-of-life; (4) Evaluate patient and carer prognosis; (5) Evaluate activity limitations as measures of disease progression and outcomes for clinical trials.

Methods Individuals with PSP/CBD are recruited nationally across Scotland. Patients consent to medical record access, data linkage, clinical examination and questionnaires covering multiple domains, postal follow-up and MRI. Each PSP/CBD patient nominates a carer to return questionnaires about their health, carer burden and proxy assessments of their relative’s capabilities. PD controls undergo motor/cognitive examination and MRI.

Results 73 PSP/CBD patients, 63 carers and 26 age-sex matched PD controls have been recruited to date. 69(94.5%) PSP/CBD cases have consented to longitudinal clinical assessment, medical record review and data linkage, and 4(5.5%) to medical record/data linkage only. 56(76.7%) have consented to longitudinal MRI.

Anticipated outcomes: Understanding the causes of delayed diagnosis and the assessment of new diagnostic tools will facilitate improved diagnosis. A better understanding of patient and carer prognosis will improve care planning and provision.

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