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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).

Example Effectiveness Research Questions Related to Improving Health and Health Care Quality for Children and Youth

Submitted by The Child and Adolescent Health Measurement Initiative (CAHMI)
April 7, 2009

  1. Compare the effectiveness of high vs. low patient/parent engagement strategies in the prevention and early detection and treatment of developmental and behavioral problems in young children. Show impact on readiness for school and cognitive, social and emotional development for early detection.

Up to 30% of young children are at risk for development or behavioral problems, yet well-child care aimed at preventing developmental problems is poor and few children are screened and many are only identified after they begin school. Given the neurodevelopmental importance of the first five years of life on a child's future health (physical, cognitive, social and emotional) and the presence of validated screening tools and national recommendations for screening, reserach should be done on how to advance screening and effective follow up. Parent engagement is hypothesized as essential to this yet few mechnisms have been developed or studies done.

  1. Compare the effectiveness of parental/maternal depression screening and treatment in pediatric care settings with current models that neither screen nor treat for parental depression in this context.

The nearly one in five mothers of young children who have symptoms of depression are no more likely to be screened for depression by their child's pediatric provider than those without symptoms. Children whose mothers are depressed are more likley to have special health care needs, be at risk for developmental problems and experience poor quality health care. We hypothesize the leveraging the well-child visits to screen and treat parental/maternal depression will lead to improved outcomes. This requires integration with adult health care and will be a model for further integrating across adult and pediatric care and assessing and addressing other family health issues that impact children.

  1. Compare the effectiveness of youth-driven, high engagement models of health care for youth with special health care needs vs. standard practice in ensuring effective transition to adult care, care coordination and self-care abilities. This can be measured by reductions in negative adverse events, success in school and life and improvements in quality of care (e.g. medical home, provision of recommended screening and counseling, adherance, etc.)

Youth with special health care needs (about 1 in 4 teens) fall through the cracks between pediatric and adult health care and are often not meaningfully engaged in assessing and seeking help to improve their own health and transition to adulthood. Fewer than 2 in 5 youth with special health care needs receive effective support to transition to adult care. We hypothesize the proactively engaging youth in self-assessment of their health and the quality of their health care can promote improvements in the self-care abilities and success in establishing effective adult health care.

How we came up with these priority questions:

In depth assessment of common, cross-cutting unmet needs and associated burden of illness for children and youth. Despite recognition of importance, gaps in mechanisms or research to engage parents or youth in improving their health and quality of health care. Involved detailed review of data collected over 12 years on quality of care and health outcomes for children and youth from the NQF endorsed PHDS and YAHCS, the MCHB/CDC NS-CSHCN (2001;2005/06) and the NSCH (2003; 2007). Incorporates >100 parent/youth focus groups about quality and impact of health care and research with >170 pediatric providers on patient-driven measurement and improvement of care.

Page last reviewed 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.


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