Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

KQ 1 - What is the burden and incidence of childhood developmental disabilities (Hearing Loss, Kernicterus/Jaundice, intellectual disability and visual impairment ) in the US?

KQ 2 - When is screening for childhood developmental disabilities indicated and in what care settings?

KQ 3 - What is the comparative effectiveness of current screening tools and methods for the diagnosis of developmental disabilities?

KQ 4 - What is the effectiveness of screening tools on assessment, access to care and interventions for developmental disabilities.

KQ 5- What is the comparative effectiveness of different models of child development and rehabilitation services on improving functional, social and health outcomes of children with developmental disabilities?

KQ 6 - What are the current rates of utilization of current therapies and interventions for for developmental disabilities?

KQ 7 - What are the harms and benefits of current therapies and interventions for developmental disabilities?

KQ 8- What are emerging technologies, interventions and models of care to screen, diagnose and treat developmental disabilities?

KQ 9 -What are the future effectiveness and comparative effectiveness research needs of developmental disabilities ?

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:

Laboratory, medical, neuropsychiatric, newborn preventive screening tools for developmental disabilities and any emerging diagnostic technologies, federal, state and federally funded programs and services to support treatment, interventions and education of DD

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.)

medicaid, SCHIP populations, children, minorities, underserved populations

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

African Americans, Asians, Latino populations,socioeconomically disadvantaged

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

Earlier signals of detection elucidated through this survey of the evidence to diagnosis (screening) of childhood DD's and targeted interventions supported by the evidence base. Identified map of evidence gaps in screening, interventions and treatments -- future research needs in specific health communities to better address health care disparities and with better clarity on what DD's topics are appropriate for each arm of the Effective Healthcare Program (evidence synthesis, generation and translationa/dissemination).

Describe any health-related risks, side effects, or harms that you are concerned about.

screening tools and interventions found to be harmful to behavioral and functional outcomes in children and costly.

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.?

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
• Pregnancy, including preterm birth

AHRQ Priority Populations

• Low income groups
• Minority groups
• Women
• 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.

In the US, 17 % of children have developmental disabilities. Less the 50% of these children are diagnosed with a developmental disability prior to beginning school and may miss opportunities for early intervention and treatment. In addition, developmental disabilities are a diverse group of severe chronic conditions that are due to mental and/or physical impairments which further complicates the assessment of children early in the course of development in addition to socio-cultural barriers and limited provider, care-giver and family education. People with developmental disabilities have problems with major life activities such as language, mobility, learning, self-help, and independent living. Developmental disabilities begin anytime during development up to 22 years of age and usually last throughout a person's lifetime. Currently, the AHRQ-Effective Healthcare Program are sponsoring three comparative effectiveness reports on Autism Spectrum Disorders and Cerebral Palsy. This proposed nomination postulates that a 'series' of comprehensive reviews of childhood developmental disabilities (kernicterus/jaundice, intellectual disabilities, visual impairment) will complement these concurrent reviews and provide an examination of both clinical and policy controversies and issues which can help direct further comparative effectiveness research and effectiveness research efforts within the breadth of this AHRQ priority condition area.

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.)

An overview of the evidence on developmental disabilities may be an ideal starting place in order to assess the issues and gaps that need to be further addressed through either evidence synthesis, evidence generation, evidence translation and dissemination, this proposal is similar in nature to the current issues forum exercise being done on cerebral palsy and the systematic review on autism. However, this will capture the other developmental disabilities defined by the CDC National Center on Birth Defects and Development. The goal of this review would be to ascertain specific areas for CER in these areas. A survey of these conditions should conduct a systematic literature review inclusive of sources such as The National Guidelines Clearinghouse, EMBASE, Cochrane, and pertinent pediatric subspecialty literature databases as relevant including the grey literature, association policy documents and guidelines with three specific objectives: 1) defining the burden of disease which includes understanding the prevalence and incidence of each developmental disability 2) defining evidence gaps in comparative effectiveness in diagnosis, screening, treatments, interventions, care delivery and care coordination. A comparative effectiveness research gaps document deliverable which describes these evidence gaps in each of these areas and their respective impact is an expected initial output. 2) A second objective would include distributing these CER defined areas into categories of evidence synthesis, evidence generation or evidence translation. 3) A third objective would include refinement of the evidence synthesis CER topics and exploring current methodological frameworks and established criteria described in the literature for selecting and prioritizing topics for systematic reviews 4) A fourth objective would be to carefully select and integrate stakeholder engagement input and technical expertise through focus groups through conference calls and using resources through th

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:

a review would provide insights on variations in clinical care and controversy in what constitutes appropriate clinical care, or a policy decision and would highlight what topics within these DD conditions are well-suited and priorities for systematic reviews.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

per above. This process will help the AHRQ-EHC program comprehensively survey the literature of developmental disabilities in order to further inform areas of comparative effectiveness research topics that could be conducted as AHRQ systematic reviews.

Describe the timeframe in which an answer to your question is needed.

within the next 6-12 months

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

underserved, socioeconomically disadvantaged populations, minorities who have barriers to access to screening, interventions and treatment.

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)

per above. This process will help the AHRQ-EHC program comprehensively survey the literature of developmental disabilities in order to further inform areas of comparative effectiveness research topics that could be conducted as AHRQ systematic reviews.

Are you making a suggestion as an individual or on behalf of an organization?

Please tell us how you heard about the Effective Health Care Program

Medical Officer