MANAGEMENT OF TUBEROUS SCLEROSIS COMPLEX IN ENGLAND- INSIGHTS INTO REAL-WORLD CLINICAL PRACTICE
Author(s)
Kingswood C1, Dew R2, Gray E3
1(On behalf of the TSC clinic network) The Royal Sussex County Hospital, Brighton, UK, 2pH Associates Ltd, Marlow, UK, 3Novartis Pharmaceuticals UK Ltd, Frimley, UK
OBJECTIVES: To understand NHS hospital activity associated with Tuberous Sclerosis Complex (TSC) management, and support the development of specialised commissioned services in England. METHODS: Hospital Episode Statistics (HES) data for patients with TSC (ICD-10 code Q85.1, recorded between 2006-2013) were extracted in July 2014. Hospital visits and admissions occurring in 2013 were analysed nationally, at 14 ‘hub’ hospitals and at the top-five most frequently accessed ‘spoke’ hospitals. RESULTS: Since 2006, 1922 patients were coded with TSC; age distribution 46% <18 years, 54% >18 years. In 2013 the most common TSC-associated conditions were epilepsy (n=1101), developmental disorder (n=485), benign lipomatous neoplasms (n=160), childhood autism (n=141), other convulsions (n=60). 615 patients attended for outpatient appointments in 2013 (all indications). There were 0.8 elective and 1.9 non-elective admissions/patient (n=489 and 1180/615, respectively). Elective admissions averaged 3.9 bed-days per patient, with 4.2 bed-days/admission for non-elective admissions. There were 1.9 day-case (1193/615) and 9.6 outpatient (5899/615) visits/patient. Of 5899 outpatient attendances, the top five specialties were paediatrics (17%), paediatric neurology (9%), neurology (6%) nephrology (5%) and ophthalmology (5%). In the ‘hub’ hospitals there were 5.4 outpatient visits/patient, with the top five specialties being paediatric neurology (12%), paediatrics (6%), nephrology (6%), neurology (4%), paediatric nephrology (4% In the spoke providers, the top-five outpatient specialties (n=1564 visits) were paediatrics (21%), learning disability (11%), neurology (8%), paediatric neurology (7%) and ophthalmology (6%). CONCLUSIONS: The prevalence of TSC was lower than expected, possibly an artefact of inappropriate NHS coding. TSC management is intensive with many outpatient/day-case visits, and non-elective admissions. Patients are also likely to be receiving care in the community, in addition to the hospital activity reported. TSC management is unevenly distributed between ‘hub’ and ‘spoke’ hospitals. Differentiated paediatric and adult services are needed. Fragmentation of TSC service provision suggests specialist management is needed, with coordination by specialist providers.
Conference/Value in Health Info
2015-05, ISPOR 2015, Philadelphia, PA, USA
Value in Health, Vol. 18, No. 3 (May 2015)
Code
PHS13
Topic
Epidemiology & Public Health
Topic Subcategory
Safety & Pharmacoepidemiology
Disease
Rare and Orphan Diseases