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Funded Projects

Children and Youth with Special Health Care Needs Research Network (CYSHCNet)

Grantee: Regents of the University of Colorado, The
Principal Investigator: Christopher Stille
Project Number: UA6MC31101
Project Date: 09/01/2017

Project Website

Age group(s)

  • Perinatal/Infancy (0-12 months)
  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)
  • Young Adulthood (19-25 years)

Targeted/Underserved Population

  • Special Health Care Needs


Problem. Children and youth with special health care needs (CYSHCN) deserve a better health care system. The MCHB Core Elements and AMCHP Standards of Care were designed to stimulate health system improvement for CYSHCN. Rigorous multi-site research on system interventions related to the Elements and Standards is urgently needed. Goals. We propose to (1) create a national, family-engaged CYSHCN research network through integration and alignment of CYSHCN experts; development and sharing of valuable Network assets; and vesting authority in CYSHCN & families at all levels; (2) advance knowledge of optimal health systems for CYSHCN, by establishing a national research agenda to catalyze investigation; conducting multi-site health systems research on CYSHCN; disseminating findings to inspire health system improvements; and sustaining and scaling research activities with external funding; and (3) train emerging CYSHCN investigators, by enhancing research training of emerging investigators; building strong intra and cross-institutional mentoring; and sparking emerging investigator projects with Network funds. Proposed Activities and Target Population. We will create a robust, inclusive, research infrastructure, with a National Coordinating Center (NCC) and three Collaborative Research Entities (CREs), and a Secondary Data Center, at its core, with governance modeled after existing, national research networks. We will engage families as partners at all levels. With diverse stakeholders, we will establish a research agenda that prioritizes the most critical research topics in systems of care for CYSHCN and carry out such research on a national scale. In the first 5 years, we will conduct at least 3 multisite prospective studies on health systems, with the goal of obtaining external funding for each, and 10 retrospective studies on populationbased databases. Targeted populations will include YSHCN, those with medical complexity, and vulnerable racial/ethnic and socioeconomic groups. Finally, we will establish a national training program with the triad of integrated curriculum, mentorship, and small grant funding. Coordination. An Executive Committee (EC) and Steering Committee (SC) of Network leadership and representatives from the NCC and CREs will set policy and oversee Network activities, in cooperation with MCHB. CREs will provide the primary settings for initial projects. Products. (1) Well-coordinated infrastructure to support family-engaged multi-site studies; (2) A published national research agenda; (3) At least 13 manuscripts reporting findings; 4) A website, webinars, and local and national presentations to disseminate findings; 5) For emerging researchers, curriculum delivery, a mentorship network, and yearly small grant program. Evaluation. Adapt existing assessments of network effectiveness, review progress semiannually and compare to objectives set by the SC; and evaluate each objective against specified goals. Quality improvement methods will be used to identify strategies to overcome missed targets.


Listed is descending order by year published.

Ames SG, Delaney RK, Houtrow AJ, et al. Perceived Disability-Based Discrimination in Health Care for Children With Medical Complexity. Pediatrics. 2023;152(1):e2022060975. doi:10.1542/peds.2022-060975

Aryee E, Perrin JM, Clancy S, Merrill C, Curran M, Oreskovic NM. Mental Health of Caregivers of Children with Medical Complexity During COVID-19. J Dev Behav Pediatr. 2023;44(3):e212-e217. doi:10.1097/DBP.0000000000001162

Barton HJ, Pflaster E, Loganathar S, et al. What makes a home? Designing home personas to represent the homes of families caring for children with medical complexity. Appl Ergon. 2023;106:103900. doi:10.1016/j.apergo.2022.103900

Berry JG, Ferrari L, Ward VL, et al. Child Opportunity Index Disparities in Pediatric Surgical Encounters During the Coronavirus 2019 Pandemic [published online ahead of print, 2023 Aug 23]. Acad Pediatr. 2023;S1876-2859(23)00340-6. doi:10.1016/j.acap.2023.08.012

Berry JG, Feudtner C. Knowledge to Advance the Clinical Effectiveness of Pediatric Complex Care. JAMA Pediatr. 2023;177(5):453-455. doi:10.1001/jamapediatrics.2023.0136

Dunbar PJ, Sobotka SA, Rodean J, et al. Prevalence of and Spending on Ear, Nose, Throat, and Respiratory Infections Among Children With Chronic Complex Conditions. Acad Pediatr. 2023;23(2):434-440. doi:10.1016/j.acap.2022.07.004

Foster C, Kwon S, Blakely C, et al. Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model [published online ahead of print, 2023 Feb 10]. J Pediatr. 2023;S0022-3476(23)00106-3. doi:10.1016/j.jpeds.2022.12.043

Kelly MM, Hoonakker PLT, Nacht CL, et al. Parent Perspectives on Sharing Pediatric Hospitalization Clinical Notes. Pediatrics. 2023;151(1):e2022057756. doi:10.1542/peds.2022-057756

Lillvis DF, Sheehan KM, Yu J, Noyes K, Harmon C, Kuo DZ. Comparing Pediatric Physical Trauma Outcomes by Special Health Care Needs Status. Hosp Pediatr. 2023;13(9):849-856. doi:10.1542/hpeds.2023-007226

"Jiang W, Hall M, Berry JG. Comparative Effectiveness of Dexamethasone Versus Prednisone in Children Hospitalized With Acute Croup. Hosp Pediatr. 2022;12(10):892-898. doi:10.1542/hpeds.2022-006567 "

Joanna Thomson, Matt Hall, Katherine Nelson, Juan Carlos Flores, Brigid Garrity, Danielle D. DeCourcey, Rishi Agrawal, Denise M. Goodman, James A. Feinstein, Ryan J. Coller, Eyal Cohen, Dennis Z. Kuo, James W. Antoon, Amy J Houtrow, Lucia Bastianelli, Jay G. Berry; Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment. Pediatrics February 2021; 147 (2)

Lindly OJ, Cabral J, Mohammed R, Garber I, Mistry KB, Kuhlthau KA. "I Don't Do Much Without Researching Things Myself": A Mixed Methods Study Exploring the Role of Parent Health Literacy in Autism Services Use for Young Children. J Autism Dev Disord. 2021 Aug 25. doi: 10.1007/s10803-021-05240-0. Epub ahead of print. PMID: 34435270.

Fenning RM, Steinberg-Epstein R, Butter EM, Chan J, McKinnon-Bermingham K, Hammersmith KJ, Moffitt J, Shui AM, Parker RA, Coury DL, Wang PP, Kuhlthau KA. Access to dental visits and correlates of preventive dental care in children with Autism Spectrum Disorder. J Autism Dev Disord. 2020 Feb 28.

Lindly OJ, Chan J, Levy SE, Parker RA, Kuhlthau KA. Service use classes among school-aged children from the Autism Treatment Network registry. Pediatrics. 2020 Apr;145(Suppl 1):S140-S150.

Millstein RA, Lindly OJ, Luberto CM, Perez GK, Schwartz GN, Kuhlthau K, Park ER. An exploration of health behaviors in a mind-body resilience intervention for parents of children with developmental disabilities. J Dev Behav Pediatr. 2020 May 12.

Smith KA, Gehricke JG, Iadarola S, Wolfe A, Kuhlthau KA. Disparities in service use among children with autism: a systematic review. Pediatrics. 2020 Apr;145(Suppl 1):S35-S46.

Coller RJ, Berry JG, Kuo DZ, Kuhlthau K, Chung PJ, Perrin JM, Hoover CG, Warner G, Shelton C, Thompson LR, Garrity B, Stille CJ. Health system research priorities for Children and Youth With Special Health Care Needs. Pediatrics. 2020 Feb 5. pii: e20190673.

Coller RJ, Berry JG, Kuo DZ, Kuhlthau K, Chung PJ, Perrin JM, Hoover CG, Warner G, Shelton C, Thompson LR, Garrity B, Stille CJ. Health system research priorities for Children and Youth With Special Health Care Needs. Pediatrics. March 2020, 145 (3) e20190673

Coury DL, Murray DS, Fedele A, Hess T, Kelly A, Kuhlthau KA. The Autism Treatment Network: bringing best practices to all children with autism. Pediatrics. 2020 Apr;145(Suppl 1):S13-S19. :

Crossman MK, Lindly OJ, Chan J, Eaves M, Kuhlthau KA, Parker RA, Coury DL, Zand DH, Nowinski LA, Smith K, Tomkinson M, Murray DS. Families’ experiences with family navigation services in the Autism Treatment Network.Pediatrics. 2020 Apr;145(Suppl 1):S60-S71.

Doupnik SK, Rodean J, Feinstein J, Gay JC, Simmons J, Bettenhausen JL, Markham JL, Hall M, Zima BT, Berry JG. Healthcare utilization and spending for children with mental health conditions in Medicaid. Acad Pediatr. 2020 Feb 1. pii: S1876-2859(20)30053-X.

Lindly OJ, Chan J, Fenning RM, Farmer JG, Neumeyer AM, Wang P, Swanson M, Parker RA, Kuhlthau KA. Vision care among school-aged children with autism spectrum disorder in North America: findings from the Autism Treatment Network Registry Call-Back Study. Autism. 2020 Jul 21:1362361320942091. Online ahead of print.

Lindly OJ, Crossman MK, Shui AM, Kuo DZ, Earl KM, Kleven AR, Perrin JM, Kuhlthau KA. Healthcare access and adverse family impact among U.S. children ages 0-5 years by prematurity status. BMC Pediatr. 2020 Apr 17;20(1):168. doi: 10.1186/s12887-020-02058-0.

Mazurek MO, Harkins C, Menezes M, Chan J, Parker RA, Kuhlthau K, Sohl K. Primary care providers’ perceived barriers and needs for support in caring for children with autism. J Pediatr. 2020 Mar 3. pii: S0022-3476(20)30027-5.

Shah MD, Glenn BA, Chang LC, Chung PJ, Valderrama R, Uyeda K, Szilagyi PG. Reducing missed opportunities for human papillomavirus vaccination in school-based health centers: impact of an intervention. Acad Pediatr. 2020 Apr 12;S1876-2859(20)30166-2.

Solecki S, Adegite E, Turchi R. Clearing the air: adolescent smoking trends. Curr Opin Pediatr. 2019 Oct;31(5):670-674.

Coller RJ, Rodean J, Linares DE, Chung PJ, Pulcini C, Hall M, Alpern E, Mosquera R, Casto E, Berry JG. Variation in hospitalization rates following emergencdy department visits in children with medical complexity. The Journal of Pediatrics

Dunbar P, Hall M, Gay JC, Markham JL, Bettenhausen JL, Perrin JM, Kuhlthau KA, Crossman M, Garrity B, Berry JG. Hospital readmission of adolescents and young adults with complex chronic disease. JAMA Netw Open. 2019 Jul 3;2(7):e197613.

Feinstein JA, Hall M, Antoon JW, et al. Chronic medication use in children insured by Medicaid: a multistate retrospective cohort study. Pediatrics. 2019;143(4):e20183397. doi:10.1542/peds.2018-3397

Feinstein JA, Rodean J, Hall M, et al. Outpatient prescription opioid use in pediatric Medicaid enrollees with special health care needs. Pediatrics. 2019;143(6):e20182199. doi:10.1542/peds.2018-2199

Perrin JM, Fairbrother G, Raphael JL. Medicaid policy commentaries: an expanded academic pediatrics section. Acad Pediatr. 2019 Jul 19. pii:S1876-2859(19)30334-1.

Thomson JE, Feinstein JA, Hall M, Gay JC, Butts B, Berry JG. Identification of children with high-intensity neurological impairment. JAMA Pediatr.

Feudtner C, Schall T, Nathanson P, Berry J. Ethical Framework for Risk Stratification and Mitigation Programs for Children with Medical Complexity. Pediatrics. 2018 Mar;141 (Suppl3):S250-S258.

Berry JG, Gay JC, Joynt Maddox K, Coleman EA, Bucholz EM, O'Neill MR, Blaine K, Hall M. Age trends in 30 day hospital readmissions: US national retrospective analysis. BMJ. 2018 Fe 27;360;k497

Blaine K, Rogers J, O'Neill MR, McBride S, Faerber J, Feudtner C, Berry JG. Clinician Perceptions of the Importance of Hospital Discharge Components for Children. J Healthc Qual. 2018 Mar/Apr;40(2):79-88.

Gay JC, Zima BT, Coker TR, Doupnik SK, Hall M, Rodean J, O'Neill M, Morse R, Rehm KP, Berry JG, Bardach NS. Postacute Care after Pediatric Hospitalizations for a Primary Mental Health Condition. J Pediatr. 2018 Feb; 193:222-228.e1.

Kuo DZ, Berry JG, Hall M, Lyle RE, Stille CJ. Health-care spending and utilization for children discharged from a neonatal intensive care unit. J Perinatol. 2018 Feb 15. doi: 5. PMID 29449613

Mahant S, Berry JG, Kimberlin DW. Neonatal HSV Disease: Balancing the Low Incidence with the Need to Treat Promptly. Pediatrics. 2018 Feb;141(2).

Markham JL, Hall M, Gay JC, Bettenhausen JL, Berry JG. Length of Stay and Cost of Pediatric Readmissions. Pediatrics. 2018 Apr;141(4).

Rehm KP, Brittan MS, Stephens JR, Mummidi P, Steiner MJ, Gay JC, Ayubi SA, Gujral N, Mittal V, Dunn K, Chiang V, Hall M, Blaine K, O'Neill M, McBride S, Rogers J, Berry JG. Issues Identified by Postdischarge Contact after Pediatric Hospitalization: A Multisite Study. J Hosp Med. 2018 Feb 2;13(4):236-242.

Russell CJ, Thurm C, Hall M, Simon TD, Neely MN, Berry JG. Risk Factors for Hospitalizations due to bacterial respiratory tract infections after tracheotomy. Pediatr Pulmonol. 2018 Mar;53(3):349-357.

Samuels-Kalow M, Peltz A, Rodean J, Hall M, Alpern ER, Aronson PL, Berry JG, Shaw KN, Morse RB, Freedman SB, Cohen E, Simon HK, Shah SS, Katsogridakis Y, Neuman MI. Predicting Low-Resource-Intensity Emergency Department Visits in Children. Acad Pediatr. 2018 Apr; 18(3):297-304.

Cohen E, Berry JG, Sanders L, Schor EL, and Wise PH. Status Complexicus? The Emergence of Pediatric Complex Care. Pediatrics 2018;141;S202.

O'Brien JE, Dumas HM, Fragala-Pinkham MA, Berry JG. Admissions to Acute Care within 30 and 90 Days of Discharge Home from a Pediatric Post-acute Care Hospital. Hosp Pediatr. 2017 Nov;7(11):682-685.

Dunbar PJ, Sobotka SA, Rodean J, et al. Prevalence of and Spending on Ear, Nose, Throat, and Respiratory Infections Among Children With Chronic Complex Conditions. Acad Pediatr. 2023;23(2):434-440. doi:10.1016/j.acap.2022.07.004

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