Caring for children with tuberous sclerosis complex: What is the physical and mental health impact on caregivers?

Anne M. Rentz, Anne M. Skalicky, Chris L. Pashos, Zhimei Liu, Matthew Magestro, Corey L. Pelletier, Judith A. Prestifilippo, Joanne Nakagawa, Michael D. Frost, David W. Dunn, James W. Wheless

Research output: Contribution to journalReview article

12 Scopus citations

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 (;plusmn&4.4) and 42.3 (;plusmn&18.2) for patients ;gt&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.

Original languageEnglish (US)
Pages (from-to)1574-1581
Number of pages8
JournalJournal of Child Neurology
Volume30
Issue number12
DOIs
StatePublished - Oct 22 2015

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Keywords

  • caregiver burden
  • health care utilization
  • health-related quality of life
  • tuberous sclerosis complex

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Clinical Neurology

Cite this

Rentz, A. M., Skalicky, A. M., Pashos, C. L., Liu, Z., Magestro, M., Pelletier, C. L., Prestifilippo, J. A., Nakagawa, J., Frost, M. D., Dunn, D. W., & Wheless, J. W. (2015). Caring for children with tuberous sclerosis complex: What is the physical and mental health impact on caregivers? Journal of Child Neurology, 30(12), 1574-1581. https://doi.org/10.1177/0883073815575364