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

What is the validity of standardized screening instruments for identifying psychiatric conditions (e.g., DMID, DSM, DCLD, ICD) in people with ID?

Broadly, we are interested in the validity of standardized screening instruments e.g., DMID, DSM, DCLD, ICD) for identifying psychiatric conditions in individuals with intellectual disability. A systematic review of the ability of available and emerging measurement tools to diagnose and monitor psychiatric conditions in individuals with intellectual disability would be of use both to researchers and care providers. Related questions may include validity of the psychometric properties of culturally appropriate instruments.

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

no

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

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.)

Individuals with intellectual disabilities have limited intellectual function and adaptive behavior. These individuals represent approximately 2 percent of the U.S. population. Causes of intellectual disability include genetic conditions, problems during pregnancy or at birth, and other health problems. Research of existing and emerging technologies to monitor the health of individuals with intellectual disabilities may vary for different patient groups but we do not recommend that the research be limited to individuals with intellectual disability of a certain age, gender, or with any specific comorbidity.

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

The population of individuals with intellectual disabilities is complex with numerous etiologies and comorbidities. Specific syndromes and disorders that affect children and adults such as Down syndrome, Fragile X syndrome, Autism, and Fetal Alcohol Spectrum Disorder (FASD) are commonly associated with intellectual disability.

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

We are interested in how psychometric diagnostic tools can be used to identify and evaluate mental health problems in individuals with intellectual disabilities. Improved diagnosis may lead to appropriate and timely treatment. Health-related benefits may include improvement in symptoms and impaired function associated with depression, anxiety, and other mood-disorders.

Proper diagnosis and mental health assessment may lead to better health service planning for individuals with intellectual disabilities. Improved delivery of care can potentially improve a wide variety of health outcomes for individuals with intellectual disability.

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

Any risk, side effect or harm related to a missed or misdiagnoses of psychiatric illness in individuals with intellectual disability are of interest.

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)

• Depression and other mental health disorders
• Developmental delays, attention-deficit hyperactivity disorder, and autism
• Functional limitations and disability

AHRQ Priority Populations

• Children
• Elderly
• 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
• Medicare
• State Children's Health Insurance Program (SCHIP)
• Other

Importance

Describe why this topic is important.

Psychiatric conditions are complex, multifaceted, and difficult to identify in people with intellectual disabilities. The rates of psychiatric conditions among individuals with intellectual disability vary considerably and depend on the diagnostic classification system used (e.g., The Diagnostic and Statistical Manual of Mental Disorders, the International Classification of Diseases, 10th edition, Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning [Intellectual] Disabilities [DC-LD]). Standardized instruments that screen for psychiatric conditions are important tools for the care of individuals with intellectual disabilities. Validity--the extent to which instruments truly measure what they intend to measure-- is essential since mental health professionals and service providers make important decisions about interventions based on these assessments.

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.)

This question is submitted based upon structured feedback from a selected group of stakeholders with expertise and research interest in the health care and management of individuals with intellectual disabilities. Based on a modified list of selection criteria, this question was identified as one of six high priority research questions from a list of 46 potential research questions for individuals with intellectual disability.

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:

Clinicians caring for individuals with disabilities frequently do not know how to screen for important psychiatric conditions.

Potential Impact

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

N/A

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

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

Adults with intellectual disability have poorer health and disparities in access to health care services compared to individuals the general population.

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)

N/A

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

Organization

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