title: Caring for Children With Tuberous Sclerosis Complex: What Is the Physical and Mental Health Impact on Caregivers?
abstract: Disease burden associated with tuberous sclerosis complex, a genetic disorder characterized by benign tumor growth including lesions in multiple organs, puts tremendous demands on families. This analysis examines the physical and mental health burden of tuberous sclerosis complex caregivers in the United States. An institutional review board-approved web-based survey of tuberous sclerosis complex caregivers collected information; descriptive analyses were conducted on age-based subgroups. A total of 275 caregivers of tuberous sclerosis complex patients responded. Mean patient age ≤ 18 years was 6.9 (±4.4) and 42.3 (±18.2) for patients >18 years of age. Caregivers reported multiple tuberous sclerosis complex manifestations and high health care utilization for patients. Caregivers spending more time on doctor visits or researching tuberous sclerosis complex had lower physical and mental health-related quality of life scores and more depressive symptoms. Tuberous sclerosis complex caregivers had significantly lower physical and mental health-related quality of life scores and more depressive symptomatology compared to US healthy adult population norms.
authors.affiliation: Evidera, Bethesda, MD, USA anne.rentz@evidera.com.
authors.forename: Anne M
authors.initials: AM
authors.lastname: Rentz
authors.affiliation: Evidera, Seattle, WA, USA.
authors.forename: Anne M
authors.initials: AM
authors.lastname: Skalicky
authors.affiliation: Teva Pharmaceutical, Boston, MA, USA.
authors.forename: Chris L
authors.initials: CL
authors.lastname: Pashos
authors.affiliation: Novartis Oncology, East Hanover, NJ, USA.
authors.forename: Zhimei
authors.initials: Z
authors.lastname: Liu
authors.affiliation: Novartis Oncology, East Hanover, NJ, USA.
authors.forename: Matthew
authors.initials: M
authors.lastname: Magestro
authors.affiliation: Novartis Oncology, East Hanover, NJ, USA.
authors.forename: Corey L
authors.initials: CL
authors.lastname: Pelletier
authors.affiliation: Novartis Oncology, East Hanover, NJ, USA.
authors.forename: Judith A
authors.initials: JA
authors.lastname: Prestifilippo
authors.affiliation: Tuberous Sclerosis Alliance, Silver Spring, MD, USA.
authors.forename: JoAnne
authors.initials: J
authors.lastname: Nakagawa
authors.affiliation: Minnesota Epilepsy Group, St Paul, MN, USA.
authors.forename: Michael D
authors.initials: MD
authors.lastname: Frost
authors.affiliation: Riley Hospital for Children, Indianapolis, IN, USA.
authors.forename: David W
authors.initials: DW
authors.lastname: Dunn
authors.affiliation: Le Bonheur Children's Hospital and the University of Tennessee, Memphis, TN, USA.
authors.forename: James W
authors.initials: JW
authors.lastname: Wheless
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003863:Depression; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data; D011788:Quality of Life; D014402:Tuberous Sclerosis / Q000628:therapy*; D014481:United States; D055815:Young Adult
keywords: caregiver burden; health care utilization; health-related quality of life; tuberous sclerosis complex