Special Health Care Needs Research


Children with Special Health Care Needs (CSHCN)

Young boy and physical therapist

Enacted in 1935 as a part of the Social Security Act, the Title V Maternal and Child Health Program is the Nation’s oldest Federal-State partnership. For over 75 years, the Federal Title V Maternal and Child Health program has provided a foundation for ensuring the health of the Nation’s mothers, women, children and youth, including children and youth with special health care needs, and their families.

Current Projects 

Body Composition and Energy Expenditure in Youth with Spina Bifida Subaward. (Kathryn Smith)

CDC CHLA National Spina Bifida Patient Registry. (PI: Kathryn Smith).

CDC National Spina Bifida Urological/Renal Protocol- CDC Urologic Management to Preserve Initial Renal Function (UMPIRE) Protocol for Young Children with Spina Bifida (PI: Kathryn Smith)

Evaluation of a Complex Intervention for Young Adults with Diabetes: The Resilient, Empowered, Active Living-Telehealth (REAL-T) Study. (Cynthia Munoz ,Co-Investigator).

Group Intervention for Teens with Insulin-treated Diabetes. (Cynthia Munoz, PI).

Examination of Rates of Hospitalization of Adults with Spina Bifida Using Los Angeles Data Resource (LADR) Aggregated Patient Information (Cecily Betz, PI).

Identifying Risk Factors for Harm in Children on Invasive Home Medical Therapies (Kathryn Smith, Co-Investigator).

Health and Psychosocial Outcomes in Young Children with Cleft Palate (HAPY) (PI: Alexis Johns)

Pediatric Device Patient Database (PD3) (PI: Juan Espinoza)

Promoting Early Literacy for Toddlers with Oral Clefts (PI: Alexis Johns)

Group Intervention to Enhance Adjustment among Teens with Insulin-treated Diabetes(PI: Cynthia Munoz)

Sleep Disorders in Patients with Spina Bifida Repaired Pre and Postnatally (Co-Investigators: Alex Van Speybroeck, Kathryn Smith)

Physiotherapy in childhood constipation management (Co-Investigator: Alex Van Speybroeck)

Survey of parent experience - Public school meal accommodations for children with food allergies (PI: Cary Kreutzer)

Emergency Department Visits and Unanticipated Hospital Admits in Patients with Spina Bifida (PI: Kathryn Smith)


Brennan RA, Larson J, Deavenport-Saman A, Kreutzer C. (2022). The role of the registered dietitian nutritionist in California group homes for weight stabilization of individuals with intellectual and developmental disabilities. Connections. Dietetics in Health Care Communities a Dietetic Practice Group of the Academy of Nutrition and Dietetics. 46(2), 18-22.

Betz C. L. (2021). Nursing's Influence on the Evolution of the Field of Health Care Transition and Future Implications. Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, 35(4), 408–413. https://doi.org/10.1016/j.pedhc.2021.01.001

Betz, C. L., Mannino, J. E., Disabato, J. A., & Marner, V. (2022). Health care transition planning: A potpourri of perspectives from nurses. Journal for specialists in pediatric nursing : JSPN, e12373. Advance online publication. https://doi.org/10.1111/jspn.12373

Betz, C. L., Mannino, J. E., & Disabato, J. A. (2021). Survey of US pediatric nurses' role in health care transition planning: Focus on assessment of self-management abilities of youth and young adults with long-term conditions. Journal of child health care : for professionals working with children in the hospital and community, 25(3), 468–480. https://doi.org/10.1177/1367493520953649

Cheak-Zamora N, Betz C.L, & Mandy T (2022). Measuring Health Care Transition: Across Time and into the Future Journal of Pediatric Nursing, 64, 91-101, https://doi.org/10.1016/j.pedn.2022.02.018.

Mannino, J. E., Disabato, J. A., Betz, C. L., Hudson, S. M., & Marner, V. A. (2022). Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners. Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, S0891-5245(22)00084-0. Advance online publication. https://doi.org/10.1016/j.pedhc.2022.04.001

Espinoza, J. C., Chin, S. W., Shah, P. Tut, M. Raymond, J. K. (2022). Proposing a Practical, Simplified Framework for Implementing Integrated Diabetes Data and Technology Solutions, Frontiers in Clinical Diabetes and Healthcare, 3, https://www.frontiersin.org/article/10.3389/fcdhc.2022.867284

Espinoza, J., Xu, N. Y., Nguyen, K. T., & Klonoff, D. C. (2021). The Need for Data Standards and Implementation Policies to Integrate CGM Data into the Electronic Health Record. Journal of diabetes science and technology, 19322968211058148. Advance online publication. https://doi.org/10.1177/19322968211058148

Espinoza, J., Shah, P., Nagendra, G., Bar-Cohen, Y., & Richmond, F. (2022). Pediatric Medical Device Development and Regulation: Current State, Barriers, and Opportunities. Pediatrics, 149(5), e2021053390. https://doi.org/10.1542/peds.2021-053390

Paraszczuk, A. M., Feeg, V. D., Betz, C. L., & Mannino, J. E. (2021). Psychometric Testing of Family Centered Care (FCC) Instrument: A Mixed Methods Analysis of Pediatric Nurses and Their Workplace Perceptions of FCC. Journal of pediatric nursing, 61, 75–83. https://doi.org/10.1016/j.pedn.2021.03.015

Schmitt, C., Castro, J., Frelinger, J. & Yin, L. (2022). Febrile Illness in 3 Adolescent Patients, The pediatric infectious disease journal, 41, 85-86, doi: 10.1097/INF.0000000000003157