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

• Prevention, early identification, trajectories, and developmental perspectives of serious mental illness
• Please see “Catch Them Before They Fall: How to Implement Mental Health Screening Programs for Youth as Recommended by the President's New Freedom Commission on Mental Health.” Sept. 2003

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:

• Compare the effectiveness of strategies to identify and treat SMI early in the course of the illness.
• Compare the effectiveness of various strategies to assist people with SMI with achieving normative success in education, relationships, employment and housing on mental health outcomes including quality of life. This could be to assist with meeting normal developmental challenges in early adulthood or during later stages of life.
• Compare the effectiveness of strategies to identify and understand individual characteristics that are factors in whether a person gets the disease, and how well they do. Include factors that predict onset and how one does after onset. – One nominator suggested rephrasing this bullet as follows: Compare the effectiveness of strategies to identify and understand individual characteristics that are associated with the occurrence of disease and the subsequent course of illness. This would include consideration of factors that predict onset as well as factors that predict the subsequent trajectory of illness, including determinants of severity and chronicity.

– Another nominator suggested rephrasing this bullet as follows: Compare the effectiveness of strategies to identify and understand individual characteristics that are associated with the occurrence of disease (as in the example for a NAMI flagship class below) and the subsequent course of illness. – Compare the appropriate setting for the prevention activity: school, community, primary care, etc. – If specific factors are identified that predict a more severe or chronic illness course, compare the effectiveness of targeted interventions in reducing the risk of a poor outcome.

Please see table regarding Family-2-Family in emailed form. It was omitted due to formatting.

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.)

Patients with Serious Mental Illness (SMI)

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

• Children and teenagers will require a special sensitivity when interviewed
• African American parents and patients will require a less clinical approach when interviewed
• Patients with specific co-occurring conditions such as substance use disorders may have distinct features of onset and may require different approaches to prevent or delay onset and minimize the chance of illness chronicity. Significant amounts of evidence associate substance use with a poorer prognosis in individuals with serious mental illness. Please see the following: Foti et al., Am J Psychiatry. 2010 Aug;167(8):987-93; Rabinowitz et al., Psychol Med. 1998 Nov;28(6):1411-9; Kovasznay et al., Schizophr Bull. 1997;23(2):195-201. Weiss et al. J Clin Psychiatry. 2005 Jun;66(6):730-5; Haddock et al., Br J Psychiatry. 2003 Nov;183:418-26.
• Please see “Catch Them Before They Fall: How to Implement Mental Health Screening Programs for Youth as Recommended by the President's New Freedom Commission on Mental Health.” Sept. 2003

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

• Increased quality of life
• Early identification of SMI
• Delayed onset of SMI – Please see “Catch Them Before They Fall: How to Implement Mental Health Screening Programs for Youth as Recommended by the President's New Freedom Commission on Mental Health.” Sept. 2003
• Decreased illness progression and burden
• Other potential outcome measures relate to level of functioning, levels of specific psychiatric symptoms (e.g., mood, psychosis, suicidal or homicidal ideas), frequency of hospitalization, need for ongoing supervision (e.g., hospital, supervised community residence), non-psychiatric health issues (medical and dental), co-occurring substance use disorders including nicotine dependence, involvement with the correctional system, and the extent to which illness course trajectory becomes severe and/or chronic and/or disabling (among other possible outcomes).

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

• Insensitive clinical approach can cause patient to become defensive, and therefore not comply with medical team.
• Please see “Catch Them Before They Fall: How to Implement Mental Health Screening Programs for Youth as Recommended by the President's New Freedom Commission on Mental Health.” Sept. 2003
• Development of chronic, severe and/or disabling illness
• High levels of risk to self or others
• Development of medical disorders (relating either to untreated serious mental illness or due to side effects of treatments for serious mental illness) that affect functioning, quality of life and morbidity/mortality (e.g., obesity, diabetes, hyperlipidemia, cancer, COPD, sleep apnea).

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
• Obesity
• Substance abuse

AHRQ Priority Populations

• Low income groups
• Minority groups
• Women
• 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)

Importance

Describe why this topic is important.

More than 30 percent of the US population suffers from a mental illness each year.1 The field of mental health research needs frameworks that address prevention strategies, developmental perspectives and trajectories (e.g., catching an illness at the first episode). Determining effective strategies to identify and treat SMI early in the course of illness could impact long-term outcomes, including quality of life. Other impacts could include level of function and the degree to which symptoms are persistent (with an associated decrease in ability to engage in normative social and vocational activities and an increase in the risk of harm to self or others). Understanding needs to be expanded that prevention is not just about prevention, but is also about delaying the onset of the condition. Research is also needed to look at psychosocial stressors that precipitate mood disorders. The problem is not just catching an illness at the initial episode but then intervening with effective strategies to reduce the risk of ongoing illness severity and/or chronicity. (One nominator suggests rewording this point to say “Given the impact of serious mental illness on individuals, their families and society, it is important to understand the factors that may contribute to the onset of these disorders. These include, but are not limited to, psychosocial stressors which may play a particular role in the onset of mood disorders. It is also essential to understand approaches to preventing the onset of illness as well as delaying onset. Once symptoms have begun it is also important to identify ways in which illness chronicity and diminutions in function and quality of life can be prevented. “) Without effective intervention, individuals with serious mental illness have substantial and persistent levels of symptoms and disability. (Mojtabai R et al. Am J Psychiatry. 2005 Jul;162(7):1291-8.). Preventive strategies could result in tremendous cost savings. One nominator noted that they b

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.)

One nominator indicated that lack of sensitivity by the medical community when their daughter became ill in 2001 is what motivated them to ask this question. She (the daughter) was in the 7th grade, and it was clear that there was something medically wrong. We were told that my daughter’s issues surrounded puberty, and overactive hormones, and that that was the cause for her “bad behavior”. It wasn’t until my daughter attempted suicide before a mental illness diagnosis was even considered. Primary and secondary prevention have the potential to profoundly impact the quality of life (health, education, employment….) and reduce cost. Information relating to this question would be helpful in developing practice guidelines for the American Psychiatric Association that would relate to prevention or delaying of illness onset as well as better illness identification. Once a serious mental illness was identified, it would be important to be able to recommend evidence based interventions that would reduce the likelihood of a chronic and disabling illness trajectory.

One nominator noted that they have been a co-investigator in a naturalistic study of longitudinal illness course in individuals who presented with an initial hospitalization for psychosis. This epidemiologically defined sample has collected extensive followup information at multiple time points out to 10 years and well as some additional followup information at approximately 20 years after an initial admission. Significant numbers of the individuals in this study (who, by definition, received care as usual) have experienced a chronic and disabling trajectory of illness. Further analysis of the factors contributing to a poorer illness course is essential in reducing the rate and extent of profound disability from these disorders, with associate personal and family burden as well as societal costs.

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:

• It is difficult for states to fund primary prevention strategies. Currently the activities and funds tend to sit outside of the current health care funding structure.
• If specific approaches could reduce or prevent the occurrence of serious mental illness; modify the severity or chronicity of ongoing symptoms; or improve function and quality of life for individuals with serious mental illness, then policy decisions could be made that would reduce the impact of these disorders.
• Please see “Catch Them Before They Fall: How to Implement Mental Health Screening Programs for Youth as Recommended by the President's New Freedom Commission on Mental Health.” Sept. 2003; Chapter 4 - Implementation Agenda for Policymakers

Potential Impact

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

• Potentially assist States in policy, funding and resource allocation decisions.
• Answers to these research questions will be able to inform the development of practice guideline recommendations for psychiatrists relating to prevention and identification of serious mental illness as well as interventions to reduce the likelihood of a chronic and disabling trajectory of illness.

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

As soon as possible. This topic was prioritized during a series of stakeholder meetings focused on SMI, held July-August 2010.

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

• Please see “Catch Them Before They Fall: How to Implement Mental Health Screening Programs for Youth as Recommended by the President's New Freedom Commission on Mental Health.” Sept. 2003
• Please see www.TeenScreen.org
• Individuals with serious mental illness are a vulnerable population and disparities and inequities in care are well documented for those with mental illness and may contribute to poorer outcomes.

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)

• Potentially assist States in policy, funding and resource allocation decisions.
• Answers to these research questions will be able to inform the development of practice guideline recommendations for psychiatrists relating to prevention and identification of serious mental illness as well as interventions to reduce the likelihood of a chronic and disabling trajectory of illness.

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

1- RTI-UNC IEF topic nomination process; 2- The Practice Guidelines project of the American Psychiatric Association was asked for the name of someone to participate; my name was submitted.; 3- We were asked to participate by the Oregon Health and Science University on behalf of the Agency for Healthcare Research and Quality’s (AHRQ) Effective Health Care (EHC) Program.