Title : Characterisation of a cohort of primary progressive multiple sclerosis patients at a tertiary referral centre
Abstract:
Introduction: Primary progressive multiple sclerosis (PPMS) is a chronic, progressive demyleinating disorder, affecting younger to middle-aged adults, causing significant disability. Patients have continuous deterioration of function. Half require walking aids within seven years of diagnosis. It accounts for 10% of all multiple sclerosis (MS) cases. Unlike other subtypes, it affects both genders equally. There is a limited number of disease-modifying therapy (DMT) available and treatment is very dependent on symptomatic management.
Aims: We aim to identify patients with PPMS attending Cork University Hospital (CUH) and identify their shared characteristics and to record what DMTs they have received. Additionally, we hope to help identify patients suitable for new medications and trials.
Method: CUH outpatient letters were searched using the keywords : “Primary Progressive”, “Primary + Multiple Sclerosis” “Progressive + Multiple Sclerosis” . The information was compared with patient files. Additionally, private clinic patient data was obtained through discussion with consultants. Adult patients attending in the past two years were included. Data was anonymised in an Excel spreadsheet.
Results: The average age of the cohort was 54.3 years. 39% are wheelchair–bound as a direct result of the disease. Notably, data-keeping was poor. 5.7% patients had doctors enquire about sexual function. Additionally, 36 were asked about depression, 67% of this group were diagnosed and treated for depression.
Conclusions: We have shown there is a need for standardised methods of data recording and a more robust IT infrastructure. Additionally, we have confirmed that PPMS is a cause of significant disability in the community and hospital, requiring input from numerous expertise.
