232696 Health-related quality of life and burden among caregivers of children with autism spectrum disorders

Sunday, November 7, 2010

Rahul Khanna, MBA, PhD , Department of Pharmacy Administration, School of Pharmacy, University of Mississippi, Oxford, MS
S. Suresh Madhavan, PhD, MBA , Department of Pharmaceutical Systems and Policy, West Virginia University, Morgantown, WV
Michael Smith, RPh, PhD , Department of Pharmacy: Clinical & Administrative Sciences, The University of Oklahoma College of Pharmacy, Tulsa, OK
Cindy Tworek, PhD, MPH , School of Pharmacy/Translational Tobacco Reduction Program, West Virginia University/Mary Babb Randolph Cancer Ctr., Morgantown, WV
Julie Patrick, PhD , Life-Span Developmental Psychology, West Virginia University, Morgantown, WV
Barbara Cottrill, EdD , Autism Training Center, Marshall University, Huntington, WV
The impact of caring for a child with autism on caregivers' health-related quality of life (HRQOL) is not fully understood. The objective of this study was to compare the HRQOL scores of autism caregivers to the general US population. Further, the study tested the impact of care recipient level of functional impairment and extent of behavioral problems, social support, family functioning, coping mechanism, and burden on caregiver HRQOL. Cross-sectional data was collected through a survey of primary caregivers (n=306) of children with autism. After adjusting for age and gender, HRQOL scores (SF-12v2) of caregivers were compared with the general US population norms using one-way t-test. The relationship among study variables was analyzed using both linear regression analysis and structural equation modeling (SEM). The mental HRQOL among female autism caregivers was found to be lower than their counterparts in the general population. A modified theoretical model was found to fit well with the data (Chi square=23.2; p=0.06; CFI=0.99; GFI=0.98; RMSEA=0.04). Greater behavioral problems among the care recipient was associated with greater caregiver burden and lower physical HRQOL (p<0.01). Caregivers who perceived greater social support adequacy had better mental HRQOL (p<0.001). Use of maladaptive coping was associated with greater burden and lower mental HRQOL (p<0.001). The model explained 46.9% of the variance in burden, 39.9% in mental HRQOL, and 4.3% in physical HRQOL. The study highlights the significant impact of caring for a child with autism on caregiver HRQOL. Findings emphasize the use of multi-pronged intervention approach to improve caregiver health.

Learning Objectives:
Identify the caregiving-situational factors that impact the health-related quality of life of caregivers of children with autism.

Keywords: Caregivers, Children With Special Needs

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to be an abstract author because of my training as a health outcomes researcher, with substantial experience in patient reported outcomes.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.