Future Research Agenda for MCH:Children with Special

Health Care Needs

November 10, 2004

Washington, DCDeborah Allen, ScD

Boston University School of Public Health

Children with special health care needs resemble other children

Basic patterns of growth and development Dependence on parents within broader community Vulnerability to typical pediatric risks Need for accessible, high quality primary and

preventive services Need for accessible, high quality acute services Variability in response to psychosocial challenges

Children with special health care needs differ from other children

Variation from typical patterns of growth and development

Heightened and/or prolonged dependence on family and broader community

Need for elaborated primary, preventive and acute care Need for accessible, high quality specialty and/or

chronic care Exposure to unique psychosocial challenges

What “special” research issues does that imply?

Variation from typical patterns of growth and development Unique developmental issues

Heightened and/or prolonged dependence on family and broader community Family needs and coping strategies Community-based systems of care

Need for elaborated primary, preventive and acute care Medical home as hub of comprehensive system of care

Need for accessible, high quality specialty and/or chronic care Care coordination as feature of medical home Disease management/secondary and tertiary prevention

Exposure to unique psychosocial challenges Psychosocial support strategies at different stages of

development

Where is relevant research done

NICHD– NICHD researchers examine growth and development, biologic and reproductive functions, behavior patterns, and population

dynamics to protect and maintain the health of all people. AHCRQ

– To improve the quality, safety, efficiency, and effectiveness of health care for all Americans. CDC

– CSHCN survey: The primary goal of this module is to assess the prevalence and impact of special health care needs among children in all 50 States and the District of Columbia.

– CDC also coordinates efforts to track progress on Healthy People 2010 HRSA

– Public health service systems and infrastructures at the community, State and/or national levels, as they apply to different maternal and child health (MCH) populations based on demographic, epidemiological, and/or other factors.

– MCH services and systems of care efforts to eliminate health disparities and barriers to health care access for MCH populations.– Services and systems to assure quality of care for MCH populations. – Promoting the healthy development of MCH populations

CMS– The research programs at the Centers for Medicare & Medicaid Services (CMS) help develop, test, and implement new health care

financing and payment policies. They also evaluate the impact of CMS programs on beneficiaries, providers, States, and other customers and partners. The scope of these activities embraces all areas of health care: costs, access, quality, service delivery models, and financing and payment approaches.

OSERS/NIDRR– NIDRR's research focus includes such areas as: employment outcomes, health and function, technology for access and function,

independent living and community integration, associated disability research areas, knowledge dissemination and utilization, and capacity building for rehabilitation and international activities

Key data sources

NCHS– NHIS– National CSHCN Survey– National Child Health Survey

YBRFS BRFSS NLSY NLS

A public health perspective

All research on children is relevant All research on childhood conditions is relevant Public health has emphasized

– Cross disability approach– Attention to function and integration– Systems approach

Title V at state and national level frames these issues in terms of 2010 Agenda/New Freedom Initiative

– Family participation– Medical home– Adequate financing– Screening– User-friendly services– Transition

Where does the research stand now

National CSHCN Survey a huge advance Useful information from other studies

– On a national level– On a localized level

Otherwise– Small scale, time limited evaluation efforts– Small number of more focused studies– Limited consistency from study to study re:

Study population Outcomes of interest Nature, scope or scale of intervention's Hypotheses about relationship of intervention to outcome

Elusive topics: Service systems

Impact of medical home on child, family, provider, system

Cost effectiveness of medical home Best practice re care coordination Cost effectiveness of care coordination Impact of Early Intervention on child, family, system Impact of Special Education on child, family, broader

community

Elusive topics: Children and youth

Factors that promote quality of life for CYSHCN– Young and school aged children, teens

Factors that promote successful transition for YSHCN Factors that promote quality of life for CYSHCN

– Young children and schoolaged children teens Factors that promote successful transition for YSHCN Impact of race, gender and other potentially interacting attributes

on youth

Where do we need it to go

1. Identify children via CAHMI screenerInclude all CYSHCN or definable subset

2. Achieve consensus on outcomes and indicators

3. Parse out and define intervention components

4. Develop families of studies

How will we get there –A systems approach to research

Agreement on goals and terms at the national level Coherent funding strategy Cooperation among grantees and researchers around

program implementation, documentation and evaluation

Cooperation among federal agencies– Within HHS– Between HHS and Education