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

Project profile

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

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.


Cohen E, Berry JG, Sanders L, Schor EL, and Wise PH. Status Complexicus? The Emergence of Pediatric Complex Care. Pediatrics 2018;141;S202. DOI:10.1542/peds.2017-1284E November 2017 29496971 Pediatrics

Markham JL, Hall M, Gay JC, Bettenhausen JL, Berry JG. Length of Stay and Cost of Pediatric Readmissions. Pediatrics. 2018 Apr;141(4). DOI:10.1542/peds.2017-2934 April 2018 29523706 Pediatrics

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. DOI:10.1542/peds.2017-1284E March 2018 29496976 Pediatrics

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 DOI:10.1136/bmj.k497 February 2018 29487063 BMJ

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 DOI:10.1038/s41372-018-0055-5 February 2018 29449613 J Perinatol

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. DOI:10.12788/jhm.2934 February 2018 29394301 J Hosp Med.

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. DOI:10.1016/j.acap.2017.12.012 April 2018 29331346 Acad Pediatr

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. DOI:10.1097/JHQ.0000000000000084 April 2018 29329135 J Healthc Qual

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. DOI:10.1002/ppul.23938 March 2018 29314789 Pediatr Pulmonol

Mahant S, Berry JG, Kimberlin DW. Neonatal HSV Disease: Balancing the Low Incidence with the Need to Treat Promptly. Pediatrics. 2018 Feb;141(2). DOI:10.1542/peds.2017-3647 February 2018 29298828 Pediatrics

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. DOI:10.1016/j.jpeds.2017.09.058 February 2018 29162345 J Pediatr

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. DOI:10.1542/hpeds.2017-0039 November 2017 29025957 Hosp Pediatr

Thomson JE, Feinstein JA, Hall M, Gay JC, Butts B, Berry JG. Identification of children with high-intensity neurological impairment. JAMA Pediatr. DOI:10.1001/jamapediatrics.2019.2672 August 2019 31424541 JAMA Pediatr

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 DOI:10.1016/j.jpeds.2019.07.034 September 2019

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. DOI:doi: 10.1001/jamanetworkopen.2019.7613 July 2019 31339547 JAMA Netw Open

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. DOI:10.1016/j.acap.2019.07.004 July 2019 Acad Pediatr

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 DOI:10.1542/peds.2018-3397 April 2019 30914443

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 DOI:10.1542/peds.2018-2199 June 2019 31138667

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 DOI:10.1542/peds.2019-0673 March 2020

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. DOI:10.1016/j.acap.2020.04.002 April 2020 Acad Pediatr

Solecki S, Adegite E, Turchi R. Clearing the air: adolescent smoking trends. Curr Opin Pediatr. 2019 Oct;31(5):670-674. DOI: 10.1097/MOP.0000000000000810 October 2019 Curr Opin Pediatr

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. : DOI:10.1542/2019-1895D April 2020

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. DOI:10.1542/peds.2019-1895G April 2020

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. DOI:10.1016/j.jpeds.2020.01.014 March 2020 J Pediatr

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. DOI: 10.1542/peds.2019-0673 February 2020

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. DOI:10.1007/s10803-020-04420-8 February 2020 J Autism Dev Disord

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. DOI:10.1016/j.acap.2020.01.013 February 2020 Acad Pediatr

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. DOI:10.1097/DBP.0000000000000813 May 2020 J Dev Behav Pediatr

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. DOI: 10.1542/peds.2019-1895I April 2020

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. DOI:10.1542/peds.2019-1895Q April 2020

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. DOI:10.1186/s12887-020-02058-0. April 2020 BMC Pediatr

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. DOI: 10.1177/1362361320942091 July 2020

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) DOI:: e2020009217. 10.1542/peds.2020-009217 February 2021

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. August 2021

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 DOI:doi:10.1542/peds.2022-060975 June 2023 Pediatrics

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 DOI:doi:10.1097/DBP.0000000000001162 April 2023 J Dev Behav Pediatr.

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 DOI:doi:10.1016/j.apergo.2022.103900 January 2023 Appl Ergon.

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 DOI:doi:10.1016/j.acap.2023.08.012 August 2023 Acad Pediatr.

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 DOI:doi:10.1001/jamapediatrics.2023.0136 May 2023 JAMA Pediatr.

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 DOI:doi:10.1016/j.acap.2022.07.004 0 Acad Pediatr.

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 DOI:doi:10.1016/j.acap.2022.07.004 March 2023 Acad Pediatr.

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 DOI:doi:10.1016/j.jpeds.2022.12.043 February 2023 J Pediatr

"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 " DOI:doi:10.1542/hpeds.2022-006567 September 2022 Hosp Pediatr.

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 DOI:doi:10.1542/peds.2022-057756 January 2023 Pediatrics

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 DOI:doi:10.1542/hpeds.2023-007226 September 2023 Hosp Pediatr