CYSHCN NATIONAL RESEARCH AGENDA DEVELOPMENT: TOTALLY STOLEN FROM RYAN’S 2019 ACADEMYHEALTH PRESENTATION, with other material added Ryan J. Coller, MD, MPH Jay Berry, MD, MPH Christopher Stille, MD, MPH University of Wisconsin-Madison Boston Children’s Hospital University of Colorado/Children’s Hospital Dennis Z. Kuo, MD, MHS James M. Perrin MD Charlene Shelton, PhD Karen Kuhlthau, PhD Clarissa G. Hoover Lindsey R. Thompson, MPH, MS Paul J. Chung, MD, MS Gemma Warner, MSW Brigid Garrity, MPH
Rationale and Objectives • CYSHCN are ~20% of the US child population • Achieving coordinated, comprehensive systems for CYSHCN has been elusive – 16% receive care meeting all 6 MCHB Core Outcomes – <50% experience MCHB-defined Medical Home CYSHCN : Children and Youth with Special Health Care Needs
Rationale and Objectives • A guiding framework, thoughtfully developed by diverse stakeholders, might promote – concentration on most pressing issues identified by stakeholders – efficient and cohesive research to transform systems Objective: Conduct a rigorously structured, multi-stakeholder process to uncover national research priorities for CYSHCN
APPROACH 1. RAM multistakeholder process 2. Feedback from CYSHCNet Advisory Committee 3. Focus groups/interviews with other stakeholders
What is the RAM? • “RAND/UCLA Appropriateness Method” – Developed to make decisions, generate evidence, or best- practice when gold standard information is not available RAM Panel Formed Round 1 Round 2 • Multidisciplinary • Individuals rate • Experts meet as expertise appropriateness for group treatments from 1-9 • Systematic literature • Discuss items review provided to • 1-3: risks > benefits • Modify concepts if experts • 4-6: uncertain needed • 7-9: benefits > risks • Re-rate
Key literature • AMCHP Standards for Systems of Care for CYSHCN • MCHB Core Outcomes • Pediatrics Systems of care for CCN- Feb 2018 • Few others
Process Overview – Adapted RAM Survey Literature RAM CYSHCNet • Diverse • Submitted by • April 2018 “What research with or Advisory, participation stakeholder about CYSHCN would you organizations Steering, and like to see in a national Executive research agenda” Committees Goal to achieve thematic saturation across a diverse, multidisciplinary stakeholder group Inductive analysis (3 coders): Research Priority Areas (themes) and Research Topics 1. Association of Maternal and Child Health Program (AMCHP) - Title V leaders from states 2. American Academy of Pediatrics (AAP) Medical Home Project Advisory Committee 3. AAP Council on Children with Disabilities 4. AAP Child Health Financing Group 5. Family Voices - Family to Family Health Information Centers and State Affiliate Organization mailing lists 6. Academic Pediatric Association (APA) Complex Care Special Interest Group listserv 7. CYSHCNet Executive, Steering and Advisory Committees, and federal partners from MCHB
Research Topics Rated in 3 Dimensions • “Rate the degree to which each Research Topic represents these 3 dimensions” – Need and Urgency (NU) “High” degree (7 -9) – Research Impact (RI) “Medium or Uncertain” degree (4 -6) “Low” degree (1 -3) – Family-Centeredness (FC)
Ranking the Research Topics Median ratings in the “high” range (≥7) for all Rank 1 three dimensions (Need / Impact / Family); >7 in at least 2 of 3 dimensions Rank 2 Median ≥7 in all three dimensions; and >7 in 1 of 3 dimensions Median <7 for at least 1 dimensions Rank 3 Median <7 for all three dimensions Rank 4
RAM RESULTS
Participants - Research Topic Development, n=269 n (%) Female Gender 189 (70) States Represented Number of unique states represented by participants 41 Relationship to CYSHCN Child or Youth with Special Health Care Needs 3 (1) Parent or Family Member 61 (23) Advocate (Child or Family) 45 (17) Health Care Professional 197 (73) Health Care Professional Role Primary Care 76 (28) Specialty Care (mostly hospitalists) 71 (26) Behavioral Health or Therapist 25 (10) Administrator 20 (7) Policy 16 (6) Other 43 (16)
Participants - RAM Panel n (%) Female Gender 15 (63) States Represented Number of unique states represented by participants 15 Race/Ethnicity White 16 (67) Black 0 Asian 4 (17) Hispanic 2 (8) Multiracial or other 2 (8) Relationship to CYSHCN Child or Youth with Special Health Care Needs 0 Parent or Family Member 6 (25) Advocate (Child or Family) 5 (21) Health Care Professional 22 (92) Health Care Professional Role Primary Care 9 (38) Specialty Care (mostly hospitalists) 5 (21) Behavioral Health or Therapist 2 (8) Administrator 4 (16) Policy 8 (33) Other 8 (33)
96 Research Topics – 9 Priority Areas “Medical professionals need to be aware of the home environment , what interventions are realistic in a day to day environment , that will let the child live as much like a typically developing child as possible …”. Research Priority Area # Topics Caregiving at Home and Caregiving Experience 11 Technology and Care 11 Access to Services and Supports -- Health System and Community 14 Financing, Payment Models, and Insurance 12 Medical Home and Comprehensive Care Models 10 Care Planning and Coordination 7 Child Health, Vulnerability, and Complexity 15 Family Caregiver Health 8 CYSHCN Research Methods Innovations 8 Total 96
Research Topic Emphasis in Each Rank Social determinants, Family caregiving, Clinical model refinement, Rank 1 Youth-adult transitions, Value (15 topics) Meaningful outcomes, Behavioral health, Home environment, Rank 2 Peer-Peer support, Family engagement, Family economics (25 topics) Linking Family and child health, School and Peers, Dental, Rank 3 Professional competencies, Clinical staff (35 topics) Rank 4 Technology-focus, Research methods, Provider-centered (20 topics)
Research Topics in 3-Dimensions
Rank 1 Research Topics Caregiving at Access to Services Financing, Home and Technology and and Supports – Payment Models, Caregiving Care Health Systems and Insurance Experience and Communities Which payment models What are feasible / and state CYSHCN acceptable telemedicine organizational approaches interventions and what most effectively enhance How can insurance is telemedicine’s quality of healthcare? How can the optimal influence on child and and community level of services at How is return on family outcomes? support lapses in home that a family investment for care early adulthood be needs to improve coordination best reduced, what is the measured, and over what child/family outcomes influence of these timeframe? be determined and gaps on CYSHCN What are effective achieved? strategies for using outcomes? Which value outcomes are technology to reduce meaningful to disparities? patients/families, health care providers and payers?
Rank 1 Research Topics Medical Home and Child Health, Care Planning and Family Caregiver Comprehensive Vulnerability, and Coordination Health Care Models Complexity What are the most How can social effective models of determinants of health be What are the best integrated healthcare routinely assessed in care; models to accomplish systems and how can they and which interventions youth-adult transition be disseminated? integrate SDH into care planning? decision making to How can family What are “key improve outcomes? ingredients” of successful adaptability be CYSHCN care models (care measured and planning, behavioral How can improved? health, coaching, etc)? interdisciplinary teams What is unique effect (including families) of rurality, and which How can palliative care divide labor and co- interventions support principles be integrated management for CYSHCN and families into routine CYSHCN care CYSHCN most living in rural settings? to improve outcomes? effectively?
Key Themes - Topic Development (example) Key Themes - Description of Research Topics within Representative Respondent Priority Areas Priority Areas Entries “Medical professionals need to Caregiving at Understanding attributes of the home Home and environment as a health determinant be aware of the home Caregiving Developing and testing interventions to environment, what interventions Experience support caregiving at home are realistic in a day to day Investigating best practices for education environment, that will let the of caregivers and home health child live as much like a typically developing child as possible…”. professionals, and peer-to-peer support
Implications and Next Steps • Value of a National Research Agenda – Prioritize most important questions facing stakeholders – Define research goals related to these questions – Provide blueprint for investigators • RAM is an initial, pragmatic step – Additional refinement work ongoing – Taxonomy of research topics – relative strengths and weaknesses Next Steps toward National Research Agenda 1. Synthesize current knowledge / key gaps for highest priorities 2. Define barriers to progress (knowledge gap or implementation gap?) 3. Articulate specific research initiatives to close knowledge gaps / overcome barriers
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