Testimony on Comparative Effectiveness Research

Christina Bethell, The Child and Adolescent Health Measurement Initiative

On April 3, 2009, public testimony on comparative effectiveness research was given at a meeting of the National Advisory Council for Healthcare Research and Quality. The testimony represents the views of the presenter and not necessarily those of the Agency for Healthcare Research and Quality (AHRQ) or the Department of Health and Human Services (HHS).

April 7, 2009

To: AHRQ Comparative Effectiveness Team
Re: Input on child and youth priorities and research

At this critical time for children's health care access and quality improvement, the Child and Adolescent Health Measurement Initiative (CAHMI) wishes to lend support to AHRQ's efforts to guide the selection of priorities for comparative effectiveness research. It is essential that these priorities and related research efforts meaningfully impact the effectiveness and efficiency of health care for children. In particular, it is hoped that priorities selected will (1) advance knowledge, capacity and effectiveness in not only treating individual diseases, but also in (1) promoting the healthy development of children and youth and (2) advancing cross-cutting health system capacities that impact all children with one or more ongoing health conditions, such as care coordination and the family-centered organization, financing and delivery of health services. This may include topics such as shared decision making, non-visit based care, integration between child and adult health care and proactive strategies to engage parents and youth as partners at every level.

The CAHMI is a national initiative established in 1997 to specify a framework for measuring and reporting on health needs and health care quality for children and to develop, test and promote the effective use of consumer-centered quality measurement and improvement tools to achieve priority health goals for children. We have partnered widely in our work and are currently instrumental in the collection and dissemination of patient-driven and centered quality measures at the local, state and national level. For 8 years we facilitated a national collaborative, including providers, states, national agencies, families and experts in specifying child quality measures and advancing the widely used Consumer Information Framework, the design of which was led by the CAHMI team.

After 12 years of collecting and evaluating data on child and youth health status, health care needs and health care quality, it is apparent that the over 1 in 5 families with one or more children with one or more significant chronic health conditions share common problems in ensuring their child receives effective health care. If addressed, these cross-cutting issues stand to markedly improve the efficiency, effectiveness and equity of health services for these children, especially impacting early detection and treatment, family and child adherence to recommended health promotion and treatment recommendations, efficient use of services (e.g. reducing ER and hospitalizations and unnecessary tests and treatments, etc.) and promoting daily living and longer term developmental health outcomes for children.

It is especially important to consider that few children with any one health condition have only one health condition (e.g. few children with asthma have ONLY asthma). The many children with co-morbid physical and emotional, behavioral or developmental problems are especially vulnerable. This pattern of co-morbidity, the common complexity of health needs as well as the fact that the most important goal in health care for children is to promote their healthy development argues for expanding beyond a strictly disease-focused and medically-focused framework in comparative effectiveness research. The fact that children are dependent on their families also argues for research in identifying and addressing family and parent health issues that dramatically impact the health of children, including parental depression and their health habits related to obesity, smoking, alcohol and substance abuse.

To assist in your deliberations, we begin by offering the following high-level summary from the 2005/06 National Survey of Children with Special Health Care Needs (most recent national data on children with ongoing health conditions who require health services).

Health Status Profile for Children With Special Health Care Needs (14%-19% of all children; over 1 in 5 households have 1 or more children with 1 or more of these health conditions)

91% of CSHCN have 1 or more conditions on the list of sixteen shown below and 25% of CSHCN have 3 or more of these conditions

CONDITIONS % OF CSHCN% of CSHCN
Allergies53%
Asthma38%
ADD/ADHD30%
Depression, anxiety, or emotional problems21%
Migraine/frequent headaches15%
Mental Retardation /Developmental Disability11%
Autism or autism spectrum disorder5%
Joint problems4%
Seizure disorder4%
Heart Problems4%
Blood problems2%
Diabetes2%
Cerebral Palsy2%
Down Syndrome1%
Muscular dystrophy0.3%
Cystic fibrosis0.3%
85% of CSHCN experience 1 or more of the following functional difficulties and 28% of CSHCN have 4 or more of the difficulties listed
FUNCTIONAL DIFFICULTIES % OF CSHCN% of CSHCN
Respiratory problems43%
Learning, understanding, or paying attention (ages 2-17 yrs old)41%
Feeling anxious or depressed29%
Behavior problems28%
Speaking, communicating or being understood23%
Making & keeping friends (ages 3-17 yrs old)20%
Chronic pain18%
Gross motor14%
Self care (ages 3-17 yrs old)12%
Fine motor11%
Swallowing, digesting food, or metabolism10%
Difficulty seeing even with glasses4%
Blood circulation2%
Uses a hearing aid1%

Thank you for your consideration of these brief comments and high level data summary. I and the CAHMI team are available to assist in further specifying the prevalence and impact of health needs in children and youth and formulating high-leverage priorities to promote research that builds on what we already know is essential to advancing the health and development of children and youth. The new 2007 National Survey of Children's Health will be released soon. As a federally funded data center, we are available to update and further elaborate on health conditions and related issues using this data or the 20065/06 NS-CHSCN if this would be helpful to you. We also have national benchmarking databases for NQF endorsed early childhood and young adult health care quality measures that may be of use in your deliberations.

Sincerely,
Christina Bethell, PhD, MPH, MBA
Director, The Child and Adolescent Health Measurement Initiative
Director, The National Data Resource Center for Child and Adolescent Health
Associate Professor, OHSU School of Medicine, Department of Pediatrics

Current as of April 2009
Internet Citation: Testimony on Comparative Effectiveness Research: Christina Bethell, The Child and Adolescent Health Measurement Initiative. April 2009. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/newsroom/speech/bethell1.html