Objective
To describe family-reported health service needs of children with medical complexity, and to assess which needs are more often addressed in a tertiary care center-based structured clinical program for children with medical complexity.
Study design
Mailed survey to families of children with medical complexity enrolled in a structured-care program providing care coordination and oversight at one of three 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
441 of 968 (46%) surveys were returned and analyzed. Respondents reported their children had a mean age of 7 (standard deviation 5) years. A majority of respondents reported the child had developmental delay (79%) and feeding difficulties (64%). Of respondents, 56% regarded the primary care provider as the primary point of contact for medical issues. Respondents reported an increase in meeting all fourteen health services needs after enrollment in a tertiary care center-based structured clinical program, including primary care checkups (82% v 96%), therapies (78% v 91%), mental health care (34% v 58%), respite care (56% v 75%), and referrals (51% v 83%) (all p<.001).
Conclusions
Tertiary care center-based structured clinical care programs for children with medical complexity may address and fulfill a broad range of health service needs that are not met in the primary care setting.