ECONOMIC IMPACT OF PATIENTS WITH TUBEROUS SCLEROSIS COMPLEX (TSC) IN THE UK- A RETROSPECTIVE DATABASE ANALYSIS IN THE CLINICAL PRACTICE RESEARCH DATALINK (CPRD)

Author(s)

Demuth D1, Nasuti P1, Lucchese L1, Gray L2, Pinnegar A2, Magestro M3
1IMS Health, London, UK, 2Novartis Pharmaceuticals UK Limited, Frimley, UK, 3Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA

OBJECTIVES:

TSC is a multi-system genetic disorder that affects up to 8,000 patients in the UK. It is associated with non-malignant lesions throughout the body, neurological manifestations, and impaired cognition. Consequently, the burden on patients, their families, and the healthcare system is thought to be substantial. This study assesses the real-world economic impact of TSC in the UK. METHODS: TSC patients were retrospectively identified between April, 1997 to March, 2012 in CPRD (Read: PK5..00, PK5..12) and linked Hospital Episodes Statistics (HES; ICD-10: Q85.1) databases. Healthcare encounters in the following settings were analysed: general practitioner (GP), inpatient, emergency room (ER) admissions and outpatient. Analyses were stratified by age at time of occurrence for pediatrics (<18 years) and adults (≥18 years). RESULTS: A total of 341 TSC patients were identified (52% female; median age 14.4 years at first event). The annual rate (mean[SD]) of healthcare encounters (by person-year) was 13.7(14.3) for paediatrics and 15.6(15.3) for adults. Annual rates (mean[SD]) of paediatric vs. adult encounters by care setting was as follows: GP, 10.1(3.1) vs. 12.9(14.2); inpatient, 1.0(1.6) vs. 0.6(1.0); ER admission, 0.4(0.8) vs. 0.3(0.7); outpatient, 3.9(3.3) vs. 2.8(3.0). Neurological manifestations (primarily epilepsy, including infantile spasms and status eptilepticus) were most common in pediatrics resulting in inpatient and ER admission use in 53% and 62% of patients, respectively. Musculoskeletal manifestations were most common in adults resulting in inpatient and ER use in 31% and 33% of patients, respectively. Mean(SD) number of surgical procedures and tests/patient-year was 0.2(0.4) and 0.3(0.4), respectively. MRI or CT scans were observed in 34% of pediatrics and 26% of adults. CONCLUSIONS: Healthcare resource utilization rates suggest significant economic burden of TSC throughout life. Absence of MRI or CT procedures may signify deviation from recommended monitoring guidelines. Further analyses will quantify the cost impact of TSC on the UK healthcare system.

Conference/Value in Health Info

2014-05, ISPOR 2014, Palais des Congres de Montreal

Value in Health, Vol. 17, No. 3 (May 2014)

Code

PHS69

Topic

Economic Evaluation

Topic Subcategory

Cost/Cost of Illness/Resource Use Studies

Disease

Rare and Orphan Diseases

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