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Health and Economic Consequences of Fragile X Syndrome for Caregivers

Bailey, Donald B. Jr PhD*; Raspa, Melissa PhD*; Bishop, Ellen MA*; Mitra, Debanjali MA, MBA*; Martin, Susan MSPH*; Wheeler, Anne PhD; Sacco, Pat MPH, RPh

Journal of Developmental & Behavioral Pediatrics: November/December 2012 - Volume 33 - Issue 9 - p 705–712
doi: 10.1097/DBP.0b013e318272dcbc
Original Article

Objective: To describe the health and economic burden experienced by caregivers of individuals with fragile X syndrome (FXS) and test the assumption that burden is associated with specific dimensions of problem behavior.

Methods: Three hundred fifty caregivers rated their son or daughter’s problem behavior and reported the use of medical services, caregiving time, impact on employment, financial burden, caregiver injuries, caregiver mental health, and prescription drug use.

Results: The son's FXS posed a significant burden for caregivers in a number of areas. Visits to medical specialists were common for both males (5.4 per year) and females (5.1 per year). Caregivers reported 9.2 hours per day of family caregiving for males with FXS and an additional 5.5 hours of paid help. Most families reported that FXS had at least some financial impact on the family, and caregivers had to take an average of 19.4 hours from work each month to care for their child’s needs. Almost one third of the caregivers had been injured by their child at least once in the past year; when injuries occurred, the frequency was high (14.7 per year), of which 2.7 required medical care. Approximately one third of the caregivers had seen a professional for anxiety, stress, or depression during the past year, and one fourth were taking medication to help with these symptoms. Caregiver burden was highly associated with problem behavior, most commonly irritability.

Conclusion: Problem behavior is a strong contributor to burden experienced by caregivers of children and adults with FXS. Clinicians should be aware of the role problem behavior plays in family adaptation and help families access appropriate medical and social support services.

*RTI International, Research Triangle Park, NC

Center for Intellectual and Developmental Disabilities, University of North Carolina at Chapel Hill, Chapel Hill, NC

Novartis Pharmaceuticals Corporation, East Hanover, NJ.

Address for reprints: Donald B. Bailey, Jr, PhD, RTI International, 3040 Cornwallis Road, Research Triangle Park, NC 27709; e-mail:

Disclosure: Supported by Novartis Pharmaceuticals Corporation. P. Sacco discloses ownership of stock in Novartis. The authors declare no conflicts of interest.

Received April , 2012

Accepted September , 2012

© 2012 Lippincott Williams & Wilkins, Inc.