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Topic Suggestion Description

View Topic Suggestion Disposition (PDF) 173 kB

Date submitted: March 09, 2010

Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.
Autism Speaks submitted a nomination on treatments for autism spectrum disorders and it was
forwarded to an EPC who was refining a related topic nomination. Three primary areas of the Autism
Speaks nomination will not be covered in the current review and are resubmitted in rank order of
priority. This revised nomination is based on a discussion with the nominator, the EPC, and the TOO
after the Key Questions for the current review were finalized.

1) For children with autism spectrum disorder (ASD), does evaluation and treatment of commonly
associated medical conditions (such as sleep disorders, dietary and/or nutritional deficiencies, GI
conditions, and allergies) improve the effectiveness of behavioral interventions in reducing core
symptoms? What are the most effective treatments, components of treatments, or combinations of
treatments to treat these medical comorbidities? (Ib and III of original nomination, current HRSA
review may answer some of these questions)

2) What are the components and the effectiveness of treatments designed to develop vocational and
employment related skills of adolescents and young adults with ASD transitioning to work and college?
At what age should these treatments begin? (IV c and d of the original nomination)

3) For children with suspected autism spectrum disorders younger than 24 months, what is the effect
of behavioral interventions on early signs of autism? What are the modifiers of outcomes for these
children? (key trials in this area are in progress, so delaying a review in this area will allow them to be published).
Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)
yes
If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:
1) treatments, components of treatments, or combinations of treatments to treat medical
comorbidities associated with ASD

2) treatments, components of treatments, or combinations of treatments to develop vocational and
employment related skills in ASD

3) treatments, components of treatments, or combinations of behavioral treatments on very young
children with early signs of ASD
What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)
Children and adults of any age with suspected or diagnosed ASD
Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)
1) any age individual with medical comorbidities associated with ASD

2) adolescents and young adults with milder forms of ASD transitioning to work and college

3) children younger than 24 months with suspected ASD
Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)
1) improved symptoms associated with sleep disorders, dietary and/or nutritional deficiencies, GI
conditions, and allergies as well as core symptoms of ASD such as social skills/interaction, language and
communication, repetitive and other maladaptive behaviors, psychological distress, adaptive
independence/self care, interpersonal relationships/community involvement

2) academic and vocational skills and abilities

3) reduction in core symptoms suggestive of ASD
Describe any health-related risks, side effects, or harms that you are concerned about.
Adverse behavioral or psychosocial reactions to behavioral or other therapies (e.g. increased
aggression or anxiety)

Regression of language, skills, or behaviors

Increases in/worsening of co?morbid symptoms

Adverse reactions to drug therapies (e.g. somnolence, weight gain)

Reduction in/negative influences on quality of life

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?
yes
Which priority area(s) and population(s) does this topic apply to? (check all that apply)
EHC Priority Conditions (updated in 2008)
  • Developmental delays, attention-deficit hyperactivity disorder, and autism
  • Functional limitations and disability
AHRQ Priority Populations
  • Children
  • Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care
Federal Health Care Program
  • Medicaid
  • State Children's Health Insurance Program (SCHIP)

Importance

Describe why this topic is important.
ASDs are a group of severe developmental disabilities characterized by lifelong impairments in
communication and social interaction. Many individuals with ASD never speak or live independently, have severe cognitive disabilities, and suffer a wide range of associated medical conditions. ASD is a highly prevalent disorder, estimated to occur in 1 out of every 150 individuals. The total annual societal per capita costs of caring for and treating a person with ASD in the U.S. are estimated to be $3.2 million and approximately $35 billion for the entire birth cohort of people with ASD. (From prior Autism Speaks nomination.)
What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)
These topics were identified as the three largest priorities for review after discussion with the
nominator from Autism Speaks following posting of the Key Questions for the current review of
behavioral interventions for ASD.
Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)
yes
If yes, please explain:
The high priority research questions described above represent areas in which very little is known
about best clinical practices. As a result, clinical care for individuals with ASD varies greatly across care providers, and clinicians must make important health care decisions that will have tremendous impact
on outcome with little guidance or knowledge. Lawmakers are struggling with how to make the best
decisions about policy and funding due to lack of an adequate knowledge base regarding what are the
most effective treatments. Parents, similarly, are left on their own to make decisions about their
children’s health care and, as a result, often fall victim to misinformation because of the void of
empirically?tested effective treatments. (From prior Autism Speaks nomination.)

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?
A systematic review of the literature will provide objective information on the benefits and potential
harms of available interventions and assist patients, their families and their providers in selecting
optimal care. The disability associated with ASD is lifelong and the costs associated with care high, so
these decisions are difficult and the consequences significant for both individuals with ASD and their
families. The variation in care across providers also should decrease as evidence?based recommendations for best treatment practices become available.
Describe the timeframe in which an answer to your question is needed.
As soon as possible for questions 1 and 2. As soon as relevant research is published for question 3.
Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.
Individuals with ASD and their families represent a highly vulnerable and underserved population. The
World Health Organization considers factors such as prevalence, functional impairment, chronicity, age
of onset, and cost in determining the health burden of a disease. Using the WHO criteria, autism’s
burden (Disability Adjusted Life Year) is higher than Type 1 Diabetes, Childhood leukemia, and Cystic
Fibrosis, among other childhood illnesses. A recent study on the health care experience of individuals
with ASD and their families demonstrated that, compared to other children with special health care
needs, children with ASD are more likely to have unmet needs for health care and family support
services, have difficulty receiving appropriate medical referrals and coordinated health care, and have families that experience more financial problems, are required to reduce or stop work to care for their child, and spend over 10 hours a week providing special health care for their child. Many of these burdens could be addressed if knowledge about best practices and the most effective medical
treatments was available. To this end, comparative effectiveness research that can address this
knowledge gap is critically needed. (From prior Autism Speaks nomination.)

Nominator Information

Other Information About You: (optional)
Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)
  • Other Health Care Professional
  • Researcher
  • Other
Are you making a suggestion as an individual or on behalf of an organization?
Organization - AHRQ
Please tell us how you heard about the Effective Health Care Program