Health Services and Health Care Needs Fulfilled by Structured Clinical Programs for Children with Medical Complexity

J Pediatr. 2016 Feb;169:291-6.e1. doi: 10.1016/j.jpeds.2015.10.010. Epub 2015 Oct 31.


Objective: To describe family-reported health service needs of children with medical complexity (CMC) and to assess which needs are more often addressed in a tertiary care center-based structured clinical program for CMC.

Study design: Mailed survey to families of CMC enrolled in a structured-care program providing care coordination and oversight at 1 of 3 children's hospitals. Outcomes included receipt of 14 specific health service needs. Paired t tests compared unmet health care needs prior to and following program enrollment.

Results: Four hundred forty-one of 968 (46%) surveys were returned and analyzed. Respondents reported their children had a mean age of 7 (SD 5) years. A majority of respondents reported the child had developmental delay (79%) and feeding difficulties (64%). Of the respondents, 56% regarded the primary care provider as the primary point of contact for medical issues. Respondents reported an increase in meeting all 14 health services needs after enrollment in a tertiary care center-based structured clinical program, including primary care checkups (82% vs 96%), therapies (78% vs 91%), mental health care (34% vs 58%), respite care (56% vs 75%), and referrals (51% vs 83%) (all P < .001).

Conclusions: Tertiary care center-based structured clinical care programs for CMC may address and fulfill a broad range of health service needs that are not met in the primary care setting.

Publication types

  • Multicenter Study
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Child
  • Child Health Services / organization & administration*
  • Child, Preschool
  • Developmental Disabilities / epidemiology
  • Disabled Children / statistics & numerical data*
  • Female
  • Health Services Needs and Demand / standards
  • Health Services Needs and Demand / statistics & numerical data*
  • Humans
  • Male
  • Surveys and Questionnaires
  • Tertiary Care Centers / organization & administration*