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TABLE 4

Descriptions of CYSHCN Research Topics in Each Rank After RAM

ThemeResearch Topic Descriptions by RAM Ranka
Rank 1 (Highest)Rank 2Rank 3 (Uncertainty in At Least 1 Rating Domain)
Caregiving at home and caregiving experience Optimizing care at home Home physical environment Peer support credentials and professional standards 
  Parent activation Home nurse core competencies 
  Family-identified education needs Independent living achievement 
  Behavioral health crises Peer mentor education 
  Training diverse parent populations Group care models 
Technology and care Telemedicine implementation Real-time symptom monitoring and treatment Parent contributing to health record documentation 
 Technology to reduce disparities Technology to train parents Data sharing across platforms and agencies 
Access to services and supports (health systems and communities) Insurance and community support through youth-adult transition Behavioral health access Medical and nonmedical service collaboration 
  Peer-peer coaching for self-management Documentation to minimize denials 
  Complex care and specialty care access Long-term supports and services across states 
   Durable medical equipment access 
   School integration 
   Oral health provision 
   Adult CYSHCN provider workforce size and competence 
Financing, payment models, and insurance Payment models that improve quality Paying families to deliver care Provider compensation 
 Care model return on investment Paid family medical leave Insurance delays and denials 
 Value outcomes meaningful to different stakeholders Payment models across life span Payment models supporting youth-adult transition 
  Medicaid-managed care impact Child health impact from health services to parents 
Medical home and comprehensive care models Effectiveness of integrated systems Parent advisory group best practices Staff/patient ratios 
 Key ingredients of effective models Conducting culturally sensitive care Family as professional team members 
 Palliative care incorporation into routine care   
Care planning and coordination Youth-adult transition planning models Shared decision-making and goal setting  
 Dividing labor and comanagement Family engagement in care planning  
 SDHb Professional care coordinators  
Child health, vulnerability, and complexity SDHb Health outcomes meaningful to families CYSHCN peer relationships 
 Rurality’s influence on health and care Identifying and reducing disparities Avoidable morbidity and mortality with youth-adult transition 
  Child and family mental health screening Youth-adult transition and mental health exacerbations 
   CYSHCN tiering systems 
   Family characteristics predicting acute care use 
   Unknown diagnoses 
   Developmental consequences that have an adult onset 
Family health Family resilience Family health influence on child health Parent mental health and addiction 
  Support for family self-care and emotional needs Parent stress during youth-adult transition 
  Family’s role in value-based decisions Shared care plans’ influence on family health 
   Family health as metric of CYSHCN system effectiveness 
ThemeResearch Topic Descriptions by RAM Ranka
Rank 1 (Highest)Rank 2Rank 3 (Uncertainty in At Least 1 Rating Domain)
Caregiving at home and caregiving experience Optimizing care at home Home physical environment Peer support credentials and professional standards 
  Parent activation Home nurse core competencies 
  Family-identified education needs Independent living achievement 
  Behavioral health crises Peer mentor education 
  Training diverse parent populations Group care models 
Technology and care Telemedicine implementation Real-time symptom monitoring and treatment Parent contributing to health record documentation 
 Technology to reduce disparities Technology to train parents Data sharing across platforms and agencies 
Access to services and supports (health systems and communities) Insurance and community support through youth-adult transition Behavioral health access Medical and nonmedical service collaboration 
  Peer-peer coaching for self-management Documentation to minimize denials 
  Complex care and specialty care access Long-term supports and services across states 
   Durable medical equipment access 
   School integration 
   Oral health provision 
   Adult CYSHCN provider workforce size and competence 
Financing, payment models, and insurance Payment models that improve quality Paying families to deliver care Provider compensation 
 Care model return on investment Paid family medical leave Insurance delays and denials 
 Value outcomes meaningful to different stakeholders Payment models across life span Payment models supporting youth-adult transition 
  Medicaid-managed care impact Child health impact from health services to parents 
Medical home and comprehensive care models Effectiveness of integrated systems Parent advisory group best practices Staff/patient ratios 
 Key ingredients of effective models Conducting culturally sensitive care Family as professional team members 
 Palliative care incorporation into routine care   
Care planning and coordination Youth-adult transition planning models Shared decision-making and goal setting  
 Dividing labor and comanagement Family engagement in care planning  
 SDHb Professional care coordinators  
Child health, vulnerability, and complexity SDHb Health outcomes meaningful to families CYSHCN peer relationships 
 Rurality’s influence on health and care Identifying and reducing disparities Avoidable morbidity and mortality with youth-adult transition 
  Child and family mental health screening Youth-adult transition and mental health exacerbations 
   CYSHCN tiering systems 
   Family characteristics predicting acute care use 
   Unknown diagnoses 
   Developmental consequences that have an adult onset 
Family health Family resilience Family health influence on child health Parent mental health and addiction 
  Support for family self-care and emotional needs Parent stress during youth-adult transition 
  Family’s role in value-based decisions Shared care plans’ influence on family health 
   Family health as metric of CYSHCN system effectiveness 

Rank 1 (highest): research topics had a median in the high range (≥7) for all 3 domains and a median of >7 in at least 2 of 3 domains; rank 2: research topics had a median of ≥7 for all 3 domains and >7 in 1 of 3 domains; rank 3: research topics had a median <7 for 1 or 2 of 3 domains, or median = 7 for all domains; rank 4 (not shown): research topics had a median <7 for all 3 domains or any disagreement. See the Supplemental Information for complete research topics and ratings.

a

Individual research topics were ranked on the basis of RAM results. Each topic was rated in 3 domains: need and urgency, research impact, and family centeredness.

b

Two SDH research topics were combined into a single topic.

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