Descriptions of CYSHCN Research Topics in Each Rank After RAM
| Theme . | Research Topic Descriptions by RAM Ranka . | ||
|---|---|---|---|
| Rank 1 (Highest) . | Rank 2 . | Rank 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 | |||
| Theme . | Research Topic Descriptions by RAM Ranka . | ||
|---|---|---|---|
| Rank 1 (Highest) . | Rank 2 . | Rank 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.
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.
Two SDH research topics were combined into a single topic.