A National Research Agenda for Children and Youth with Special Health Care Needs
Children and youth with special health care needs (CYSHCN) require services beyond what is typical for pediatric patients. However, the current system is not fully equipped to meet their needs. This puts CYSHCN at risk for chronic physical, developmental, behavioral, and emotional conditions.
There is a lot of research being done in the U.S. and beyond to improve health systems for CYSHCN. However, health outcomes have not improved. Projects are often small, cover a wide range of topics, and are not well-coordinated. To promote higher-impact research to improve the health and well-being of CYSHCN, researchers from the CYSHCNet network received input from more than 800 stakeholders to develop a coordinated national research agenda on health systems.
- Highlights important health system challenges faced by key stakeholders (e.g., patients and families, health care providers, insurers, administrators, etc.);
- Organizes research topics and goals to identify opportunities for high-impact research, to address system challenges and to promote progress toward improved health outcomes; and
- Provides examples of potential studies to fill research gaps that will guide CYSHCN investigators and other stakeholders moving forward.
Abstract and Background
Below is a video abstract by Dr. Ryan Coller, who highlights the rationale behind the creation of the National Research Agenda, the process behind defining key priority research areas and a summary of the six suggested sub-topics for future research.
Read the full paper, published in the Journal of the American Academy of Pediatrics and download the Project Brief.
Priority Areas & Research Topics
- Assessing and Addressing Social Determinants of Health Among Children and Youth With Special Health Care Needs
- How can social determinants of health be routinely assessed in CYSHCN care, and which interventions most effectively integrate social determinants to improve child and family outcomes
- What are effective strategies for using technology to reduce disparities?
- Research on Family Health and Children and Youth With Special Health Care Needs
- How can family adaptability be measured and improved?
- Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home
- How can the optimal level of home supports (including health health care) that a family needs to improve child/family outcomes be determined and achieved?
- What are feasible / acceptable telemedicine interventions and what is their influence on child and family outcomes?
- How does rurality uniquely affect CYSHCN, and what are effective interventions to support CYSHCN and families living in rural settings?
- Research Agenda for Implementation of Principles of Care for Children and Youth With Special Health Care Needs
- What are “key ingredients” of successful CYSHCN care models (care plans, crisis planning, behavioral health, social work, navigators, coaches, etc)? How can they be disseminated and implemented most efficiently?
- How can interdisciplinary teams (including families) divide labor and co-management for CYSHCN most effectively?
- What are the most effective integrated health system models and how can they be disseminated?
- How can palliative care principles be integrated into routine CYSHCN care, and what is the impact?
- How can the education and health systems better integrate to improve CYSHCN health outcomes?
- What are the domains and metrics that should be used to assess CYSHCN systems of care (reflecting consensus across stakeholder groups)?
- Moving From Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs
- Which payment models and state CYSHCN organizational structures (e.g., increased managed care use, accountable care, bundled payments, attention to social determinants, etc) most effectively enhance quality of care and CYSHCN wellbeing
- How is return on investment for CYSHCN care coordination best measured, and over what timeframe?
- Which value outcomes are meaningful to patients/families, health care providers and payers?
- Transitions from Youth to Adult Care
- What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (e.g., to new providers, new settings, new schools, etc)?
- How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?