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In 2013, OAR-funded researcher Rahul Khanna, Ph.D., an assistant professor in the School of Pharmacy, University of Mississippi, undertook a study, “Health-Related Quality of Life and its Determinants in Adults with Autism Spectrum Disorders,” to assess the physical and mental health-related quality of life and health utility among adults with autism. Both health-related quality of life and health utility are key health outcome metrics that are commonly used in making treatment decisions and in the conduct of economic evaluations.

Health-related quality of life refers to the physical, psychological, and social parts of an individual’s health that are influenced by their experiences and perceptions. Unlike quality of life, which encompasses both health and non-health related circumstances, such as environmental and economic factors, health-related quality of life represents health-related factors that are generally modifiable and amenable to healthcare interventions. Over the past few years, health-related quality of life has become a key component of patient healthcare assessment across different clinical settings.

Dr. Khanna and his team wanted to see if socio-demographic factors (age, gender, race, insurance status, occupation, education, marital status), general health (other physical and mental illness), use of autism-related treatment, age when diagnosed with autism, social support, coping, and autism severity had an influence on health-related quality of life.

 

The Study

In order to assess the health-related quality of life and health utility, Dr. Khanna created an online survey that was sent to more than 40,000 adults with autism registered with the Interactive Autism Network. The research team received a total of 291 complete responses. On average, survey participants were 30 years of age. Most (80%) were white, and three-fifths were male.  

 

Results

Adults with autism (18-24 years; 25-34 years) had significantly lower physical health-related quality of life than their age-adjusted peers in the general adult U.S. population.  Further, mental health-related quality of life was lower across all age and gender categories among adults with autism. 

These were some of the key findings:

  • Male adults with autism had lower mental health across all age groups as compared to male adults in the US population.
  • Male adults with autism ages 25 to 34 and 55 to 64 also had lower physical health compared to male adults in the same age groups in the US population.
  • Female adults with autism ages 18 to 54 had lower mental health compared to female adults of the same ages in the US population.
  • Adults with autism without any other mental illness also had lower mental health as compared to adults in the US population.

In other words, most adults with autism in the United States have poorer physical and mental health than their peers.

The good news in the results of the study is that social support and coping had a significant influence on the physical and mental health of adults with autism who participated in the survey. Adults with autism who had higher social support (from family and friends) had better physical and mental health.

Other socio-demographic factors (marital status, health insurance status) and presence of other disorders also had an influence on physical and mental health of adults with autism. However, coping and social support consistently emerged as significant factors influencing both physical and mental health of adults with autism.

In his summary, Dr. Khanna noted that understanding the role of coping and social support in the health of adults with autism is key to improving their physical and mental health. Clinicians and other professionals involved in autism management among adults with autism should consider assessing both physical and mental health of these individuals on a regular basis. Further, support services provided to adults with autism should incorporate elements of both positive coping techniques and social support provision.

With the increasing prevalence of autism, the number of adults with autism will only increase in the coming years. Having the results of a study like Dr. Khanna’s can provide insight and direction to those in the autism community, from individuals with autism and their parents to educators and clinicians, as well as to policy makers at all levels.