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 September 2003 NCSAC Meeting Minutes Appendix E

Appendix E
National Children’s Study Advisory Committee 7 th Meeting
Thematic Sub-Group Breakout Meeting Summary: Obesity and Altered Physical Development
September 15, 2003
Holiday Inn Select
Bethesda, MD

Chair: Willa M. Doswell, Ph.D., R.N., F.A.A.N., NCSAC Member, University of Pittsburgh School of Nursing

Opening

Dr. Doswell and Robert T. Michael, Ph.D., NCSAC Member, University of Chicago, reviewed the specific hypotheses contained in the reference document.

Outcome Measures

Dr. Doswell noted that quality health care services connect to mediate the genetic and environmental influences on health: safe, effective, patient- and family-centered, timely, efficient, equitable, and coordinated with public health. Dr. Michael observed that an excellent definition of "good health" could be found on page 15, and that the theme of good health should be included in the overall discussion.

The hypothesis is that medical care intervention impacts outcomes, which is probably enough specificity if the interventions and outcomes are clearly defined. For example, smoking cessation (intervention) affects outcome (lung disease), which may be attenuated by the intervention.

Redundant/Overlapping Hypotheses

Under H2, Dr. Michael noted that quality health services could reduce disparities in health and developmental outcomes. However, this is a very broad hypothesis.

Under mental health services, Dr. Doswell asked how many specific hypotheses should be appropriate under the subheads—medical care, prevention, dental, community health services, and prenatal and obstetric services.

Dr. Doswell noted that a better approach would have been to develop a theory and create hypotheses to test that theory. The approach seems to be the reverse. However, Dr. Michael pointed out that the hypotheses presented appear to be reasonable and valid for consideration (although some concepts were not amenable to the proof process). For example, the response to the concept of terrorism depends on the individual’s experience, geographic location, and other participant characteristics.

Item MH2C concerns early assessment of parental attitudes to identify important early opportunities. Participants observed that attitudes may be measured, but opportunities typically cannot be measured, only identified.

Under MH2D, the choice of instruments and their management is also a major aspect of the Study, one that requires time, money, and expertise.

Participants discussed evidence-based care for key identified mental health problems delivered within routine clinical practice (see MH3A). As indicated in MH3B, receipt of evidence-based care will vary with out-of-pocket costs, parental attitudes, and community characteristics. Dr. Mattison noted that insurance can dramatically affect those costs. The availability of the Children’s Health Insurance Program (CHIP) also impacts the formula, as do state policies and the payment process (which may or may not be included under "community characteristics").

Donald R. Mattison, M.D., NCSAC Chair, National Institute of Child Health and Human Development, NIH, DHHS, also noted the extreme range of expenditure data that could be collected. Dr. Doswell expressed concern that the number of questions might be too extensive and require too much time to answer. Moreover, organization and financing features of children’s primary health care are related to access, quality, and cost (see MH4).

Dr. Doswell pointed out that the PS section was fully covered by DHHS guidelines. The initial intent was to develop a hypothesis to include screening in clinical records. Dr. Mattison agreed that a simple policy to that effect would be sufficient without further study

MC1 stated that immunization records would be greater in health care systems that use EMR. Dr. Mattison noted that most entities will have to use EMR. If that is the case, Robert T. Michael, Ph.D., NCSAC Member, University of Chicago, noted that nearly universal reliance on EMR would make the hypothesis difficult to test.

There was agreement to refer MC3 to the Gene-Environment Interactions Working Group.

Dr. Michael also suggested that the MC4 hypothesis looks at the effect of a child’s death on the family, something not really included in the Study.

The Sub-Group went on to discuss the MC5 and MC6 hypotheses. Dr. Mattison explained that a "medical home" was a primary care site that handles all health needs for a child (as opposed to individuals seeking medical services from various sources). Dr. Doswell felt that these data could be derived from standard medical records.

Dr. Mattison suggested referring MC8 to the Nutrition, Growth, and Pubertal Development Working Group. He pointed out that some data on dental care and dental health disparities should be captured, and the Working Group could narrow the issues to a manageable number. Dr. Michael also noted that MC8 should be connected to health disparities.

Recommendations:

  • Measurable variables should be defined, as should terms such as "other disasters."
  • The Study should be specific about parental attitudes versus abilities.
  • This Working Group should cooperate with the Development and Behavior Working Group to specifically identify mental health areas to be included (for example, ADHD, depression, and schizophrenia).
  • Develop a set of questions on expenditures (including insurance coverage) that would take less than 10 minutes to answer.
  • The new approach to MH4 obviates MH5.
  • Delete MC1. (This hypothesis has already been answered).
  • Delete the item in the PS section on behavioral and developmental testing. (This is already well established.)
  • Delete the entire PS section. (This material is covered by DHHS guidelines.)
  • Refer the issue of EMR to the Immunity, Infections, Vaccines Working Group, with the caveat that the nearly universal reliance on EMR will make the hypothesis difficult to test).
  • Refer MC3 to the Gene-Environment Interactions Working Group.
  • Delete MC4.
  • Delete MC5, concerning surgical outcomes for children cared for in children’s hospitals.
  • Delete MC6—children with special health care needs.
  • Delete MC7.
  • Refer MC8 to the Nutrition, Growth, and Pubertal Development Working Group, with the guideline to ensure that data on dental care and dental health disparities are captured. Also MC8 should be tied to health disparities.

Community Health Services

In discussing community health services (see items CH1A and CH1B), Dr. Mattison noted that the two appear to be the same. There was a brief discussion about price elasticity of tobacco among teenagers, with agreement that adolescents were very sensitive to price elasticity.

Dr. Doswell offered that minority youth start smoking and drinking at a later age than white adolescents, perhaps for economic reasons. She suggested that additional study is probably not needed, however.

Dr. Doswell asked if ADHD had been assessed in relation to "effective school-based services." Dr. Michael indicated that the terms should be more specifically defined.

Dr. Michael noted that the CH2B and CH3 hypotheses would add something to the Asthma Working Group and the Development and Behavior Working Group.

Dr. Mattison explained that recommendations from the Sub-Group might include the method of capturing data, standards against which pediatric care will be judged, and consideration of proposals or outcomes. Then the referral groups could identify an individual who might work with a particular Working Group to ensure that ideas are shared and included in hypotheses. From this exercise, the Working Group should be able to sharpen their hypotheses.

Recommendations:

  • Refer CH2 A, B, and C to the Gene-Environment Interactions Working Group.
  • Refer CH2B and CH3 to the Development and Behavioral Working Group.
  • Refer CH4A and B to the Nutrition, Growth, and Pubertal Development Working Group.
  • Consider including normal pediatric care.

Community Outreach and Communications Working Group

Dr. Doswell asked if this Working Group should focus on Study design (rather than the hypotheses). Dr. Mattison emphasized that the Working Group must also answer questions about the strategy for engaging local communities.

Sarah Keim, M.A., ICC Member, National Children’s Study Coordinator, National Institute of Child Health and Human Development, NIH, DHHS, reported briefly on the Working Group’s focus groups, describing the site locations and composition of the groups. She noted that the focus groups were dramatically different, but taken together provided a good range of populations. A report has been issued containing comments on the various discussion groups: parents, physicians, community leaders, and ethnic and socioeconomic groups. Dr. Mattison discussed using a cross-sectional sample plus a specific "other" group, which could be any specific group (for example, African Americans, members of the Jewish community, or physicians).

Dr. Doswell commented on incentives, which are not always money. It was observed, however, that the focus group participants were interested primarily in the money reward for their participation.

Dr. Mattison suggested that the role of the Working Group might be as a consultancy, to assist in bringing the communities together, assessing the most effective ways to communicate, and responding to obstacles and challenges. Dr. Doswell expressed concern that including appropriate representation in the Study should be a part of the strategy.

It was observed that there were profiles on most cities that would be useful in the Working Group’s communications effort.

Recommendations:

  • Share some of the hypotheses with the focus groups, and perhaps even provide some feedback to the participants.
  • Even with monetary reimbursement for focus group participation, there should be a rewards formula for extra effort, since no effort would produce a certain minimum participation anyway.
  • The Working Group should begin to develop a list of incentives and recruitment strategies for the community (that is, worship centers, government, schools, businesses, and residents).
  • Ensure inclusion of Native Americans in the Study.
  • Develop a plan for disseminating Study results.

Sharing Study Results

Dr. Doswell read the third question, about how Study results should be reported to participants, if appropriate. Dr. Mattison suggested that parents should be clearly told that the Study is an expert in child growth and development. By participating, parents would receive regular reports on Study progress. There are barriers to consider, however: privacy issues, community attitudes about government, local turf issues, mobility issues, language and cultural issues, and science versus religious beliefs.

Early Origins of Adult Health Working Group (Tab F)

Dr. Michael noted that this Working Group has developed an "umbrella" hypothesis, with about eight specific concepts. These concepts were developed in the early part of 2002 and discussed at the last NCSAC meeting.

The Working Group focused on health issues early in life that may impact health in later years. David Barker has done work in this area on the effects of fetal exposures and growth and the potential for an impact on heart disease in adult life. It is a contentious, but very influential body of work, which the Working Group mentions but does not emphasize.

An example of the concept, not related to Barker’s work, is increased risk (by a factor of 6–10) of premenopausal breast cancer among women who were 4-plus kilograms at birth. Te increased estrogen at birth results in more rapid growth in later adolescent years, and that growth affects cancer cell growth.

Dr. Michael noted that studies had not been conducted to validate Barker’s theory or the breast cancer risk group. It would be appropriate for the Working Group to consider this hypothesis but be wary of committing to it before sufficient evidence has been developed to support it.

The Sub-Group discussed several hypotheses (see pages 8, 10, 12, and 14) and agreed that most were appropriate. Dr. Doswell raised the question that, among all the Working Groups, there may be too many hypotheses to address effectively.

The number of hypotheses will impact participant burden, as well as the burden on researchers and research units. It was observed that researcher expertise is more relevant to the data analysis phase than the data collection process.

Dr. Michael pointed out that the Study is a life course study—not a snapshot approach to research. Daniel J. Swartz, NCSAC Member, Children’s Environmental Health Network, added that the possibility of overlap of hypotheses is less important than the fact that the hypotheses will drive the collection of data over time and that provides the opportunity for a wide range of analyses.

Sub-Group members agreed that the life course issue (see page 15) was not a true hypothesis that could be tested. It was suggested that the concept could be addressed as a small study. Item 6, dealing with cancer, requires measurement of sun exposure, which the Working Group should address in terms of methodology. In numbers 7 and 8, the data mentioned is already collected in routine care and the hypotheses should be deleted.

Recommendations:

  • Delete the life course hypothesis in its present form (see page 15).
  • The Working Group should address item 6 (see page 15) in terms of methodology.
  • Delete the hypotheses under items 7 and 8. These data already are collected in routine care.

In Attendance:

Thematic Sub-Group Members
Chair: Willa Doswell, Ph.D., R.N., F.A.A.N., NCSAC Member, University of Pittsburgh School of Nursing
Sarah Keim, M.A., ICC Member, National Children’s Study Coordinator, NICHD, NIH, DHHS
Pauline Mendola, Ph.D., ICC Member, EPA
Robert Michael, Ph.D., NCSAC Member, University of Chicago
Kenneth Schoendorf, M.D., M.P.H., ICC Member, CDC, DHHS
Daniel J. Swartz, NCSAC Member, Children’s Environmental Health Network

Observers and Other Participants
Donald Mattison, M.D., NCSAC Chair, NICHD, NIH, DHHS

 

  6/1/2008
  8/31/2005