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Topic Suggestion Description

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View Topic Suggestion Disposition (PDF) 1.2 MB

Date submitted: January 07, 2013

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 effectiveness of interventions designed to support children in transition from pediatric care to adult care with special health care needs?

Ineffective transition planning can have significant negative consequences on children with special health care needs, his/her family, and on the system at large. For example, poor transition planning can lead to gaps in medical health care, creating more serious health conditions. Furthermore, caregivers face difficulty and stress related to having to independently negotiate the transition to adult health care system after having experienced a much more supportive pediatric health care system.
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:
Interventions designed to support children in transition from pediatric care to adult care with special health care needs, specifically to support the needs of family members/caregivers, and provider training to promote successful transition from pediatric to adult care services.
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.)
Persons with disabilities (children, adolescents)
Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)
Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)
Successful transition planning to adult care without loss or discontinuity of services, satisfaction with care, and continued appropriate management of chronic health issues.
Describe any health-related risks, side effects, or harms that you are concerned about.
Successful transition from pediatric to adult care is intended to prevent harms.

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

Importance

Describe why this topic is important.
When children with special health care needs enter adolescence they face significant problems concerning transferring from their pediatrician to adult medical care. Questions arise about when, how, and if the children with special health care needs should transition from pediatric services to adult mainstream health care services. While it is suggested that this transition start in the early teenage years, there is little consensus among pediatricians and other health care professionals about an optimal time or stage for children with special health care needs to make the transition from pediatric to adult health care services. Rather, decisions are usually made on a case by case basis. Ineffective transition planning can have significant negative consequences on the children with special health care needs, his/her family, and on the system at large. Poor transition planning can lead to gaps in medical health care, creating more serious health conditions.
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 topic was nominated by a panel of stakeholders to identify potential systematic research topics for health care and mental health for individuals with intellectual disabilities.
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:
While it is suggested that this transition start in the early teenage years, there is little consensus among pediatricians and other health care professionals about an optimal time or stage for children with special health care needs to make the transition from pediatric to adult health care services. Other research has found that general practitioners are not comfortable treating children with special health care needs, as they lack experience and knowledge about the management of special health care needs. Providers have reported that pediatricians were hesitant to transfer young adults to adult care.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?
This research will inform decisions about when, how, and if children with special health care needs should transition from pediatric services to adult health care services, providing data to support guideline development for clinicians and policy makers. It will also provide families with information for planning and to help them identify good transition care and advocate for their children.
Describe the timeframe in which an answer to your question is needed.
As soon as possible. A very large number of children with special health care needs become adults every day1, and systems lack evidence to support this process.

1. Okumura MJ, McPheeters ML, Davis MM. State and National Estimates of Insurance Coverage and Health Care Utilization for Adolescents with Chronic Conditions from the National Survey of Children's Health, 2003. Journal of Adolescent Health, 2007 Oct;41(4):343-349. http://www.sciencedirect.com/science/article/pii/S1054139X07001784
Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.
Our question is focused on providing answers for a very vulnerable population: children with special health care needs. Even within this population, there are significant socioeconomic status, racial, and other disparities at play. Disparities by race/ethnicity, socioeconomic status, and the severity of the health conditions; those with the most significant health conditions are less likely to have transition discussions. Ineffective transition planning can have significant negative consequences on the children with special health care needs, his/her family, and on the system at large. Poor transition planning can lead to gaps in medical health care, creating more serious health conditions.

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)
  • Researcher
Are you making a suggestion as an individual or on behalf of an organization?
Organization - Vanderbilt University Medical Center Evidence-based Practice Center
Please tell us how you heard about the Effective Health Care Program