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USE OF SERVICES FOR MULTIPLE SCLEROSIS PATIENTS ACCORDING TO EDSS
  1. Mark Willis,
  2. Katherine Harding,
  3. Neil Robertson
  1. University Hospital of Wales

    Abstract

    Introduction Clinical services supporting patients with Multiple Sclerosis (MS) represents a significant proportion of the work load for a modern department of neurology. However planning for development of specialist services in MS is frequently based on limited data and estimates at best commonly represent a ‘best guess’. Specific knowledge of use of services by MS patients at different stages of disease combined with accurate epidemiological studies of disease frequency and disability specific characterisation would therefore be of considerable value in service planning and development. Employing data collected from a large clinical specialist regional MS service where access to patients is based on demand we have analysed service use within a large randomly selected cohort of patients and extrapolated data to provide minimum requirements for service support corrected for disease course, disability stage and disease frequency.

    Methods The regional service for patients with MS in south Wales was established in 1999 and now comprises a large multidisciplinary team. Clinical data including contacts are recorded prospectively and supplemented by an annual standardised questionnaire which includes self–reported assessments and nature and frequency of contacts with all clinical services. Data from completed questionnaires relating to the preceding 12 months were analysed and validated by prospective clinician derived data and recorded on an MS specific clinical database. Patients were stratified according to disease course and disability status using the Expanded Disability Scale Status (EDSS). Average contact times for clinical sub–specialities recommended by NICE for incorporation into specialist MS services were determined and converted to whole time equivalent (WTE) staff requirements.

    Results 542 completed questionnaires were returned indicating 2892 contacts with clinical services (mean 5.3 per patient). 151 (25.8%) patients had an EDSS between 0–3.5, 93 (15.5%), 4–5.5, 276 (44.3%) 6.0–7.5 and 85 (14.4%) ≥8.0. 51 (9.4%) had PPD, 199 (36.7%) RRMS, 194 (35.8%) SPMS, 8 (1.5%) relapsing with sequelae, 1 (0.2%) CIS and in 89 (16.4%) patients disease course was unclear. Clinical data from a well–characterised prevalent population of 1739 was employed to correct for disability and disease course in order to provide relevance for prevalent patient populations. Minimum WTEs for all core disciplines within the MS team as suggested by NICE were calculated per 1000 prevalent patients: Neurologist; 0.42, neurology specialist nurse; 2.41, psychologist; 0.25, physiotherapist; 0.73, occupational therapist; 0.22, social worker; 0.39 and speech and language therapist; 0.03. WTEs were also calculated for additional, non–core components of the team.

    Discussion This study demonstrates usage data for clinical services for a cohort of MS patients in SE Wales stratified for disability and disease course. These data may be useful in understanding service needs for this group of patients in order to provide for continuing health needs and predicting future requirements. It may also be of value for determining health care resources required to instigate comprehensive specialist MS services. A parallel web based tool is provided for calculation of service provision according to population size and case mix.

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