Caring for Children With Tuberous Sclerosis Complex: What Is the Physical and Mental Health Impact on Caregivers?. (October 2015)

• Record Type: Journal Article
• Authors: Rentz, Anne M.; Skalicky, Anne M.; Pashos, Chris L.; Liu, Zhimei; Magestro, Matthew; Pelletier, Corey L.; Prestifilippo, Judith A.; Nakagawa, JoAnne; Frost, Michael D.; Dunn, David W.; Wheless, James W.
• Is Part Of: Journal of child neurology. Volume 30:Number 12(2015:Oct.)
• Page Start: 1574
• Page End: 1581
• Publication Date: 2015-10
• Subjects: tuberous sclerosis complex -- caregiver burden -- health-related quality of life -- health care utilization; Nervous system -- Diseases -- Periodicals; 618.928
• DOI: 10.1177/0883073815575364
• Languages: English
• ISSNs: 0883-0738

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.