The Burden of Caring for Individuals with Tuberous Sclerosis Complex (TSC) Who Experience Epileptic Seizures: A Descriptive UK Survey

Hanna Skrobanski, Kishan Vyas, Sally Bowditch (), Lena Hubig, Edward Dziadulewicz, Louise Fish, Pooja Takhar and Siu Hing Lo
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Hanna Skrobanski: Acaster Lloyd Consulting Ltd
Kishan Vyas: Jazz Pharmaceuticals, Inc.
Sally Bowditch: Jazz Pharmaceuticals, Inc.
Lena Hubig: Acaster Lloyd Consulting Ltd
Edward Dziadulewicz: Jazz Pharmaceuticals, Inc.
Louise Fish: Genetic Alliance UK
Pooja Takhar: Tuberous Sclerosis Association
Siu Hing Lo: Acaster Lloyd Consulting Ltd

PharmacoEconomics - Open, 2023, vol. 7, issue 2, No 11, 299-312

Abstract: Abstract Introduction Tuberous sclerosis complex (TSC) is a rare multisystem genetic condition characterised by benign tumours; prevalent manifestations include epilepsy and neuropsychiatric disorders. This study examined the burden of TSC for primary caregivers and families, exploring the impact of characteristics such as seizures. Methods Primary caregivers of individuals with TSC in the United Kingdom participated in an online survey, comprising the Pediatric Quality of Life Inventory™ Family Impact Module, Hospital Anxiety and Depression Scale (HADS), and TSC-specific items. Responses were analysed using descriptive and regression analysis statistics (closed-ended) or qualitative content analysis (open-ended). Results Seventy-three participants partially completed and 59 fully completed the survey; 95% were female, and 90% were parents of an individual with TSC. A median (range) of 2 (1–11) household members were carers. Primary caregivers spent a mean (standard deviation [SD]) of 104.3 (51.7) hours caring in the previous week, reporting high mean (SD) HADS scores of 11.2 (4.8) (anxiety) and 7.9 (4.4) (depression) and considerable family burden. Increased seizure frequency increased hours spent caring by primary caregivers (p = 0.01) and was associated with a decreased mean (SD) family functioning score of 46.2 (23.0) and parent health-related quality of life (HRQL) score of 45.4 (20.3) (both p = 0.03). Multivariable models predicted intellectual disability increased hours spent caring by primary caregivers (p = 0.01–0.04), and neuropsychiatric comorbidities decreased family functioning (p = 0.02) and caregiver HRQL (p

Date: 2023
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DOI: 10.1007/s41669-023-00387-1

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