Secondary Data Center

Directed by Drs. Jay Berry (Boston Children’s Hospital, Harvard Medical School) and Matt Hall (Children’s Hospital Association), the CYSHCNet Secondary Data Center catalyzes retrospective analyses on prioritized topics using population-based databases and surveys.  Findings from the analyses inform prospective, multi-site network projects.  The findings also support the research of emerging investigators, including their career development award applications. 

  • All Payor Claims Databases
  • Kids’ Inpatient Database
  • IBM Watson Marketscan Medicaid Database
  • Medical Expenditure Panel Survey
  • National Inpatient Sample
  • National Survey of Children’s Health
  • Nationwide Readmissions Database
  • Pediatric Health Information System (PHIS)

Topics of secondary data research in children and youth with special healthcare needs and in children with medical complexity include:

  • Adverse Childhood Events
  • Chronic Medication Use
  • Disability and Social Security Income
  • Emergency and Urgent Care
  • Health Services of Adolescents and Young Adults
  • Hospital Readmissions
  • Medical Equipment and Supplies
  • Mental Health
  • Multimorbidity
  • Opioid Exposures
  • Neonatal and Post-Acute Facility Care
  • Perioperative Care and Outcomes

Prospective Research Projects

Caregivers of children with medical complexity (CMC) may be able to accurately and efficiently evaluate clinically meaningful changes in their child’s health. Single-center studies have observed that parents’ lack of confidence in their child’s health has correlated with their child’s risk of readmission shortly after discharge. If caregiver confidence can be clinically monitored longitudinally in real time, then potential exists not only to link it with downstream health outcomes, but also to target timely interventions to help caregivers at high-risk moments. This pilot study is evaluating (1) feasibility and acceptability of an innovative health information technology to collected repeated measures of caregiver confidence of their CMC’s health over time; and (2) viability of constructing trajectories of caregiver confidence in CMC’s health and relationships among confidence, hospital utilization, and child and caregiver health-related quality of life.

This project will use the National Survey of Children’s Health to assess relationships between household composition (e.g., single vs. dual parent, number of siblings, etc.) as well as other familial and social attributes on the location of usual source of sick care for CYSHCN.

Medical home components, including care management and shared care plans, are beneficial to children with medical complexities (CMC). Some CMC are co-managed by a community-based primary care physician (PCP) and a children’s hospital-based complex care provider (CCP). Better integration between these providers may improve efficiency, family experience, and quality of care, while leveraging the benefits of each location. This pilot study will compare video-conferencing among caregivers of CMC, PCPs, and CCPs to a traditional co-management process using several caregiver-reported and utilization outcomes

All Recent Publications by Network Members

For recent publications by members of the CYSHCNet, please visit our NCBI page here

Select Publications by Network Members

Glotzbecker M, Troy M, Miller P, Berry J, Cohen L, Gryzwna A, McCann ME, Hresko MT, Goobie S, Emans J, Brustowitz R, Snyder B, Hedequist D. Implementing a Multidisciplinary Clinical Pathway Can Reduce the Deep Surgical Site Infection Rate After Posterior Spinal Fusion in High-Risk Patients. Spine Deform. 2019 Jan;7(1):33-39.

Coller RJ, Ehlenbach ML. Making Time to Coordinate Care for Children With Medical Complexity. Pediatrics. 2019 Jan;143(1).

Nackers A, Ehlenbach M, Kelly MM, Werner N, Warner G, Coller RJ. Encounters From Device Complications Among Children With Medical Complexity. Hosp Pediatr. 2019 Jan;9(1):6-15.

Mattson G, Kuo DZ; Committee On Psychosocial Aspects Of Child And Family Health; Council On Children With Disabilities.
Pediatrics. Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families. 2019 Jan;143(1).

Gay JC, Hall M, Markham JL, Bettenhausen JL, Doupnik SK, Berry JG. Association of Extending Hospital Length of Stay With Reduced Pediatric Hospital Readmissions. JAMA Pediatr. 2018 Dec 28.

Kelly MM, Hoonakker PL, Coller RJ. Inpatients Sign On. Medical Care. 2018:1. doi:10.1097/mlr.0000000000001043.

Deans KJ, Sabihi S, Forrest CB. Learning health systems. Semin Pediatr Surg. 2018 Dec;27(6):375-378.

Kuo DZ. The Medical Home for Children with Medical Complexity: Back to Basics. The Journal of Pediatrics. 2018. doi:10.1016/j.jpeds.2018.11.050.

Ross SM, Smit E, Twardzik E, Logan SW, McManus BM. Patient-Centered Medical Home and Receipt of Part C Early Intervention Among Young CSHCN and Developmental Disabilities Versus Delays: NS-CSHCN 2009-2010. Maternal Child Health J. 2018 Oct;22(10):1451-1461.

Van Cleave J, Holifield C, Neumeyer AM, Perrin JM, Powers E, Van L, Kuhlthau KA. Expanding the Capacity of Primary Care to Treat Co-morbidities in Children with Autism Spectrum Disorder.
J Autism Dev Disord. 2018 Dec;48(12):4222-4230.

Hoagwood K, Atkins M, Horwitz S, Kutash K, Olin SS, Burns B, Peth-Pierce R, Kuppinger A, Burton G, Shorter P, Kelleher K (2018). A Response to Proposed Budget Cuts Affecting Children’s Mental Health: Protecting Policies and Programs That Promote Collective Efficacy.  Psychiatric Services, 1;69(3):268-273. doi: 10.1176/

Rotheram-Borus, MJ, Hoagwood K, Counts N, and McCabe MA (2018). Investing in children to promote America’s prosperity. NAM Perspectives. Commentary, National Academy of Medicine, Washington, DC.  For more information, see:

Hoagwood K, Peth-Pierce R, Glaeser E, Whitmyre E, Shorter P, Vardanian MM.  Implementing Evidence-Based Psychotherapies for Children and Adolescents within Complex Mental Health Systems.  In Weisz J & Kazdin AE (eds).  Evidence-Based Psychotherapies for Children and Adolescents, Third Edition.  NewYork :  NY, Guilford Press; 2017.

Hoagwood KE, Zima BT, Buka SL, Houtrow A, Kelleher KJ.  State-to-State Variation in SSI Enrollment for Children With Mental Disabilities: An Administrative and Ethical Challenge.Psychiatric Services, 68(2):195-198. doi: 10.1176/

Forrest CB, Blackwell CK, Camargo CA. Advancing the Science of Children’s Positive Health in the National Institutes of Health Environmental Influences on Child Health Outcomes (ECHO) Research Program. J Pediatr. 2018;196:298-300. doi:10.1016/j.jpeds.2018.02.004.

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;38(6):734-741. doi:10.1038/s41372-018-0055-5.

Coller RJ, Ahrens S, Ehlenbach ML, et al. Transitioning from General Pediatric to Adult-Oriented Inpatient Care: National Survey of US Children’s Hospitals. J Hosp Med. 2018;13(1):13-20. doi:10.12788/jhm.2923.

Stille, C. Complexity “tiering” that was published on the LPFCH website earlier this year.

Berry JG, Glader L, Stevenson RD, et al. Associations of Coexisting Conditions with Healthcare Spending for Children with Cerebral Palsy. J Pediatr. 2018;200:111-117.e1. doi:10.1016/j.jpeds.2018.04.021.

Berry JG, Ash AS, Cohen E, Hasan F, Feudtner C, Hall M. Contributions of Children With Multiple Chronic Conditions to Pediatric Hospitalizations in the United States: A Retrospective Cohort Analysis. Hosp Pediatr. 2017;7(7):365-372. doi:10.1542/hpeds.2016-0179.

Van Cleave J, Holifield C, Perrin JM. Primary Care Providers’ Use of a Child Psychiatry Telephone Support Program. Acad Pediatr. 2018;18(3):266-272. doi:10.1016/j.acap.2017.11.007.

Stille CJ, Honigfeld L, Heitlinger LA, Kuo DZ, Werner EJ. The Pediatric Primary Care-Specialist Interface: A Call For Action. J Pediatr. 2017;187:303-308. doi:10.1016/j.jpeds.2017.04.054.

Allshouse C, Comeau M, Rodgers R, Wells N. Families of Children With Medical Complexity: A View From the Front Lines. Pediatrics. 2018;141(Supplement 3):S195-S201. doi:10.1542/peds.2017-1284D.

Coller RJ, Kelly MM, Ehlenbach ML, Goyette E, Warner G, Chung PJ. Hospitalizations for Ambulatory Care-Sensitive Conditions among Children with Chronic and Complex Diseases. J Pediatr. 2018;194:218-224. doi:10.1016/j.jpeds.2017.10.038.

Barnert ES, Coller RJ, Nelson BB, et al. Experts’ Perspectives Toward a Population Health Approach for Children With Medical Complexity. Acad Pediatr. 2017;17(6):672-677. doi:10.1016/j.acap.2017.02.010.

Perkins J, Agrawal R. Protecting Rights of Children With Medical Complexity in an Era of Spending Reduction. Pediatrics. 2018;141(Supplement 3):S242-S249. doi:10.1542/peds.2017-1284I.

Sobotka SA, Agrawal RK, Msall ME. Prolonged Hospital Discharge for Children with Technology Dependency: A Source of Health Care Disparities. Pediatr Ann. 2017;46(10):e365-e370. doi:10.3928/19382359-20170919-01.

Agrawal R, Stille C. Building Systems That Work for Children With Complex Health Care Needs: Editor’s Note. Pediatrics. 2018;141(Supplement 3):S192-S194. doi:10.1542/peds.2017-1284C.

Kuo DZ, McAllister JW, Rossignol L, Turchi RM, Stille CJ. Care Coordination for Children With Medical Complexity: Whose Care Is It, Anyway? Pediatrics. 2018;141(Supplement 3):S224-S232. doi:10.1542/peds.2017-1284G.

Turchi RM, Narayan A, Esquivel M, Serwint JR. Needs Assessment for a Medical Home Curriculum for Pediatric Residents. Glob Pediatr Heal. 2017;4:2333794X1774030. doi:10.1177/2333794X17740301.

Forrest CB, Ravens-Sieberer U, Devine J, et al. Development and Evaluation of the PROMIS® Pediatric Positive Affect Item Bank, Child-Report and Parent-Proxy Editions. J Happiness Stud. 2017;19(3):699-718. doi:10.1007/s10902-016-9843-9.

Langer CS, Antonelli RC, Chamberlain L, Pan RJ, Keller D. Evolving Federal and State Health Care Policy: Toward a More Integrated and Comprehensive Care-Delivery System for Children With Medical Complexity. Pediatrics. 2018;141(Supplement 3):S259-S265. doi:10.1542/peds.2017-1284K.

Lozano P, Houtrow A. Supporting Self-Management in Children and Adolescents With Complex Chronic Conditions. Pediatrics. 2018;141(Supplement 3):S233-S241. doi:10.1542/peds.2017-1284H.

Houtrow AJ, Zima BT. Framing childhood mental disorders within the context of disability. Disabil Health J. 2017;10(4):461-466. doi:10.1016/j.dhjo.2017.04.006.

Lail J, Fields E, Schoettker PJ. Quality Improvement Strategies for Population Management of Children With Medical Complexity. Pediatrics. 2017;140(3):e20170484. doi:10.1542/peds.2017-0484.

Lail J, Schoettker PJ, White DL, Mehta B, Kotagal UR. Applying the Chronic Care Model to improve care and outcomes at a pediatric medical center. Jt Comm J Qual Patient Saf. 2017;43(3):101-112. doi:10.1016/j.jcjq.2016.12.002.

Fields E, Neogi S, Schoettker PJ, Lail J. Using Lean methodologies to streamline processing of requests for durable medical equipment and supplies for children with complex conditions. Healthcare. Published December 12, 2017. Accessed August 29, 2018.

Hoagwood K, Peth-Pierce R, Glaeser E, Whitmyre E, Shorter P, Vardanian MM.  Implementing Evidence-Based Psychotherapies for Children and Adolescents within Complex Mental Health Systems.  In Weisz J & Kazdin AE (eds).  Evidence-Based Psychotherapies for Children and Adolescents, Third Edition.  NewYork :  NY, Guilford Press; 2017.