Educating Health Care Professionals About Down Syndrome

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Educating Health Care Professionals About Down
Syndrome A Partnership between three University
Centers for Excellence in Developmental
Disabilities October 2003-March 2006

• University of Southern California, UCEDD,
  Childrens Hospital Los Angeles
• Cary Kreutzer, MPH, Co-Director
• Center for Disabilities and Development at the
  University of Iowa Hospitals and Clinics
• Dianne McBrien, MD, Co-Director
• Institute for Community Inclusion at the
  University of Massachusetts, Boston and
  Childrens Hospital Boston
• David Helm, PhD, Co-Director

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Problem

• INFORMATION IS AVAILABLE
• INFORMATION IS NOT REACHING FAMILIES

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Project Goals

• Identification of provider training needs using a
  health communications approach identifying how
  learning is best achieved to assure that
  information developed is easily accessed and
  ultimately shared with families.

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Key Components of the Integrated Marketing Model

• Formation of Strategic Partnerships
• Assembly of Expert Physician Advisors
• Health communications/marketing model
• Audience-defined vs. organization-defined product
• National data to support the product developed

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Product Development Steps(Product Lifecycle)

• Research Formative evaluation
• Planning Establish partnerships
• Product development Formulate content using
  experts and existing resources
• Dissemination plan development
• Product testing, evaluation and refinement
• US Department of Health and Human Services,
  Public Health Services, National Institutes of
  Health, National Cancer Institute (2002). Making
  Health Communication Programs Work, Washington,
  DC.

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Step 1 Research Formative Evaluation
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Key informant interviews

• Staff of family and professional organizations
• State and national level
• Health care professionals
• CA, IA, and MA

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Formative Evaluation

• Key information interviews
• Focus groups
• Surveys
• Literature /Product review

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Key Informant Interviews
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Focus Groups

• Parents of children with DS lt 6 years of age
• Subjects identified at partner agency sites
• Urban and rural
• English and Spanish speakers

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Focus Groups

• Los Angeles County
• 1 Group English 9 Families
• 1Group Spanish 3 Families
• Brian Skotko Survey Data (National)
• Kentucky UCEDD Data from Parent Focus Groups

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What did parents say?

• May not recall information presented by a health
  care provider at diagnosis
• Need basic print resources for later reference
• Every child is differenteach familys learning
  will be different
• Helpful to network with other families

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Healthcare Professionals Survey Items

• Demographic and socioeconomic data
• Learning preferences
• Barriers to information sharing
• Selection criteria for resources
• Practice logistics re information sharing

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Research Findings Health Care Professionals
Survey
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Learning Preferences to Stay Current in Practice
100
95
94
91
89
90
83
81
80
72
70
60
57
56
60
50
40
30
20
10
0
Journal
Medical Text
Professional
Lecture /
Consult with
Association
Workshop
Colleagues
Print
Online
In-Person
Pediatrician (n 647)
Family Physician (n 330)
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Step 2 Planning Establish National
Partnerships
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National Partnerships

• American Academy of Pediatrics
• American College of Obstetricians and
  Gynecologists
• American Academy of Family Physicians
• National Association of Genetic Counselors
• National Association of Pediatric Nurse
  Practitioners
• National Down Syndrome Congress
• National Down Syndrome Society

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Step 3 Product Development
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Target Audience MDs serving fewer than 1 child
with Down Syndrome/Yr

• Low incidence?challenge in staying current,
  maintaining resources in office
• Assessing credibility of resources when pressed
  for time
• Difficulty linking families to other families

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Product Development

• Inventory of existing products
• Identification of expert advisors
• Develop draft product
• Develop draft brochure
• Review prototype
• Contract with a graphic designer (parent of a
• child with Down syndrome)

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www.aap.org
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Expert Physician Committee

• Marilyn Bull, MD, Pediatrician
• Director of Developmental Pediatrics, Riley
  Hospital for Children
• AAP Committee on Genetics AAP Liaison to
  our Project
• W. Carl Cooley, MD, Pediatrician
• Associate Professor, Dartmouth Medical School
• Medical Director, Crotched Mountain
  Rehabilitation Center
• Allen C. Crocker, MD, Pediatrician
• Senior Associate in Medicine, Childrens
  Hospital Boston
• Associate Professor of Pediatrics, Harvard
  Medical School
• Program Director, Institute for Community
  Inclusion, UCEDD
• Don Van Dyke, MD, Pediatrician
• Professor of Pediatrics, University of Iowa
• Co-Director, Down Syndrome Clinic, Center for
  Disabilities and
• Development, University of Iowa
  Hospitals Clinics

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Product format

• PDF document that could
• Distributed via email
• Printed on 8 ½ x 11 paper from a personal
  computer
• Mailed in a legal envelope
• Fit in a womans purse

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Product Look and Feel

• Parents wanted happy faces and busy families
• MDs wanted a comprehensive document that covered
  all the pertinent info that parents need to know
  at diagnosis
• Important to connect with national organizations
  and other families
• What about branding of the product?

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Step 4 Develop the Dissemination Plan
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Dissemination Plan

• While product was in development we explored
  opportunities and costs of dissemination channels
  within each professional organization
• Full plan evolved over time and is still IN
  PROCESS even though funding ended

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Step 5 Product Testing and Evaluation
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Product Testing

• Pre-test and prototype testing
• Conference calls with national organizations
• Physician expert advisors
• Parent and MD review (51)
• Parents changed title to be more
• family-friendly

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Product Testing Questions

• Would you use or distribute the brochure?
• Would you recommend to colleague?
• Were all the important topics covered?
• Was the look/design inviting?
• Was the brochure easy to read?
• Do you think it would help you to initiate a
  discussion with families?