With 20 presentations and posters, one publication, and others in press or accepted, 2025 has been a productive year for the Systems & Policy Research Network. Network projects highlight key issues relevant to the health and wellbeing of children and youth with special health care needs and their families.

2025 Publications (as of November 1, 2025)

• Kathleen Huth, Nikki Montgomery, Jay G. Berry, Ryan J. Coller, Bethlyn Houlihan, Ketty Toussaint, Isabel Stringfellow, Meg Comeau; What Families of Children With Medical Complexity Say About Their Family Well-Being. Pediatrics 2025; e2025071939. 10.1542/peds.2025-071939
• Vasan A, Kenyon CC, Feudtner C, Fiks AG. Prevalence of Social Needs Among Hospitalized Children With Complex Chronic Conditions. Hosp Pediatr. 2025 Jul 1;15(7):e318-e321. doi: 10.1542/hpeds.2024-008317. PMID: 40467063; PMCID: PMC12213128. (EI project from 2024)
• Malik KE, Shelton C, Marin A, Serrano VJ, Anthony BJ, Schor EL, Mosquera RA, Lerner C, Stille CJ. The Mental and Behavioral Health Services Available to Children With Medical Complexity in Complex Care Programs. Clin Pediatr (Phila). 2025 Dec;64(12):1717-1725. doi: 10.1177/00099228251372723. Epub 2025 Sep 29. PMID: 41024400. (Funded by then CYSHCNet)
• Bruton L, Spewak M, Grage J, Mass J, Foster C, McBride ME. Creation of a Novel Longitudinal Pediatrics Resident Curricular Program Addressing the Medical and Social Needs of Children with Medical Complexity. J Pediatr. 2025 Jul 23;287:114751. doi: 10.1016/j.jpeds.2025.114751. Epub ahead of print. PMID: 40712741. (EI project from 2024)
• Foster C, Lin E, Feinstein JA, Seltzer R, Graham RJ, Coleman C, Ward E, Coller RJ, Sobotka S, Berry JG. Home Health Care Research for Children With Disability and Medical Complexity. Pediatrics. 2025 Jan 14:e2024067966. doi: 10.1542/peds.2024-067966. Epub ahead of print. PMID: 39808130.
  • This publication was included in the AAP Section on Home Care and Council on Children with Disabilities newsletters, the Lucille Packard CYSCHN newsletter, a cover article for the 3/2025 issue of Exceptional Parent magazine pg. 33, and for the NJ AAP pgs. 32-33 
• Ames SG, Houtrow AJ, Gatewood AK, Zigler C, Ware A, Berry JG, Coller RJ. Disability-Based Discrimination and Forgone Health Care in Children with Special Health Care Needs. Pediatrics. 2025 Jun 3:e2024068782. doi: 10.1542/peds.2024-068782. Epub ahead of print. PMID: 40456539.
  • This publication was highlighted in the AAP Council on Children with Disabilities newsletter, the Lucille Packard CYSCHN newsletter, and the SPAN Newsletter pg. 25. It was also covered in Disability Scoop.
• Nicole E Werner, Makenzie Morgen, Anna Jolliff, Madeline Kieren, Joanna Thomson, Scott Callahan, Neal deJong, Carolyn Foster, David Ming, Arielle Randolph, Christopher J Stille, Mary Ehlenbach, Barbara Katz, Ryan J Coller, Toward digital caregiving network interventions for children with medical complexity living in socioeconomically disadvantaged neighborhoods, JAMIA Open, Volume 8, Issue 1, February 2025, ooaf011, https://doi.org/10.1093/jamiaopen/ooaf011
• Morgen M, Gatewood A, Brosco JP, Houtrow A, Chung PJ, Ghandour R, Payne S, Coller RJ. High-Impact, Modifiable Health Indicators From the National Survey of Children’s Health. Pediatrics. 2025 Aug 1;156(2):e2024067793. doi: 10.1542/peds.2024-067793. PMID: 40623701.
• Coller et al. Preventing respiratory illness in cerebral palsy: Results of a pilot randomized controlled trial (RE-PACT project)

2025 Posters and Presentations

Child Quality of Life Scoping Review

• Taylor IK, Ames SG, Lomangino S, Friedman H, Comeau M, Houlihan B, Bjella K, Stille CJ. Which measures of quality of life align best with what matters to children with medical complexity and their families?
• Stille CJ, Ames SG, Friedman H, Lomangino S, Houlihan B, Bjella K, Taylor IK, Comeau M. Where are the Gaps in Current Quality of Life Measurement in Measuring a Healthy Life for Children with Medical Complexity?
• Stille CJ, Comeau M, Lomangino S, Friedman H, Houlihan B, Bjella K, Taylor IK, Ames SG. A Medical Home is Essential to Quality of Life for CYSHCN, but Poorly Measured by Existing Quality of Life Surveys.

Enhancing Telehealth for Children with Medical Complexity (CMC)

• Jay Berry, Laurie Glader, Ricardo Mosqura Heather Moore, Julia Orkin, Ricki Goldstein. Charting the Waters of Pediatric Complex Care Programs: Health Services, Referral Sources, and Patient Eligibility.
• Ricardo A. Mosquera MD, Jessica O’Neill, Julie Eapen MD, Maria Caldas-Vasquez MD, Tomika Harris DNP, Teddy Gonzalez, Maria E. Tellez MD, Maria Del Mar Romero Lopez MD, Ara Luz MHA, Matt Hall PhD, Sreejata Dutta PhD, Jay Berry MD, Giuseppe Colasurdo MD, Aravind Yadav MD. An Enhanced Home-Based Telemedicine Program Using Remote Examination Devices for Children with Medical Complexity: A Pragmatic Randomized Control Trial (RCT).

Family CIRCLE

• Gatewood AK, Kieren M, Kelly MM, Coller RJ. Understanding health status change in a national sample of children with special healthcare needs using mixed methods.
• Verdelis G, Coller RJ, Patterson E, Gatewood A, Gerber D, O’Hare C, Ames S. The Impact of Discrimination in Medical Settings on Mental Health Among Caregivers of Children with Special Healthcare Needs.
• Ames S, Verdelis G, Gatewood A, Gerber D, Coller RJ. Everyday Discrimination in Medical Settings for Families of Children with Special Healthcare Needs.

Family Well-being – Crowdsourcing

• Bethlyn Houlihan, MSW, MPH, Meg Comeau, MHA, Allysa Ware, PhD, MSW, Kathleen Huth, MD, MMSc, Nikki Montgomery, MA, MEd, GPAC, Ryan J. Coller, MD, MPH, Ketty Toussaint, MBA, Jay Berry, MD, MPH (he/him/his). Partnering to Understand What Matters Most to Facilitate Family Well-Being for Children with Medical Complexity.

Family Well-being – Scoping Review

• Bethlyn Houlihan, MSW, Nikki Montgomery, MA, MEd, GPAC, Meg Comeau, MHA, Allysa Ware, PhD, MSW, Kathleen Huth, MD, MMSc, Ryan J. Coller, MD, MPH, Ketty Toussaint, MBA, Jay Berry, MD, MPH. Partnering to Understand What Matters Most to Facilitate Family Well-Being for Children with Medical Complexity.

Hospital to Home Transitions

• David Ming, Neal deJong, Joseph Davis, Hwanhee Hong, Angel Davalos, Nikhita Nanduri, Lauren Wein, Alexandra Weir, Ava Strohmeyer Abby Neuerburg, Jennifer Thomas, Kelly Chason, Ryan Coller, Sharron Docherty, Hannah Lane. Hospital to Home transitional care interventions for CYSHCN: Pre-trial mixed method implementation contextual and readiness evaluation.

Pediatric POTS Care

• Kirti Sivakoti, Olivia Parnell. Corinne Espinoza. System Level barriers for timely diagnosis in POTS: Voices from providers and families.

RE-PACT

• Coller RJ, Eickhoff C, Chung P, Kloster H, Cushing C, Gerber D, Wagner T, Delgado R, Warner G, Porras-Javier L, Klitzner T, Lerner C, Ia S. Preventing Respiratory Illness in Cerebral Palsy: Results of a Pilot Randomized Controlled Trial.
• Howell KD, Kloster HM, Lerner C, Klitzner T, Cushing C, Gerber DM, Katz B, Chung P, Delgado-Martinez R, Ia S, Wagner T, Ehlenbach M, Warner G, Coller RJ. Designing Just-In-Time Adaptive Interventions for Respiratory Illness in Cerebral Palsy.

SafeCare@Home4Kids

• Foster CC, Walsh P, High M, Barerra L, Coleman CL, MM Storey, Montgomery N, Rodriguez V, Valdez D, Haywood CE, Lagu T, Walsh KE, Khan A, Werner NE. Patient Safety Events in Children Receiving Home Healthcare.” Pediatric Academic Societies Meeting.
• Carolyn Foster, MD, MS; Peter Walsh; Michelle High, MSN; Leo Barrera; Cara L. Coleman, JD, MPH; Margaret M. Storey, PhD; Nikki Montgomery MA, MEd, Vanessa Rodriguez, Danny Valdez, PhD; Carol E. Haywood, PhD, OTR/L; Tara Lagu, MD, MPH; Kathleen E Walsh, MD, MS; Alisa Khan, MD, MPH; Nicole E. Werner, PhD. Patient Safety Events in Children Receiving Home Healthcare.
• Walsh P, Castillo L, Chen Y, Elahi K, Ghosh K, Espinoza J, Werner N, Foster CC. Medical Device Design Flaws and Needs for Children with Medical Complexity at Home.” Pediatric Academic Societies Meeting. Children with Chronic Conditions 1. Oral Platform Presentation.

Service Differences among CMC in South Carolina

• Koob, C., Schieber, H., Foster, C., & Simpson, K. Leaning into family partnership: Examining the critical role of lived experience in advancing healthcare for children with medical complexity.
• Koob, C., Schieber, H., Foster, C., & Simpson, K. Identifying drivers of healthcare service disparities and family-driven, policy solutions among children with medical complexity in South Carolina.
• Koob, Caitlin & Schieber, Heloise. Examining healthcare service disparities among children with medical complexity in South Carolina and identifying family-driven policy solutions.