Elsevier

The Journal of Pediatrics

Volume 169, February 2016, Pages 291-296.e1
The Journal of Pediatrics

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

Portions of the study were presented at the meeting of the Pediatric Academic Societies, Vancouver, BC, Canada, May 3-6, 2014, as well as at the meeting of the American Academy for Cerebral Palsy and Developmental Medicine, San Diego, CA, September 10-13, 2014.
https://doi.org/10.1016/j.jpeds.2015.10.010Get rights and content

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.

Section snippets

Methods

This study is a multisite survey of families of children currently enrolled in structured, comprehensive care programs for CMC at 3 tertiary care children's hospitals: Medical Home Clinic, Arkansas Children's Hospital; Special Needs Program, Children's Hospital of Wisconsin; and Complex Care Service, Boston Children's Hospital. The programs were identified as relatively mature structured complex care programs, with each program in existence for at least 8 years prior to the survey. Each program

Results

Of 968 mailed surveys, 441 (46%) were completed and returned. The survey response rates were 43% (n = 140) for Boston families, 46% (n = 201) for Arkansas families, and 50% (n = 100) for Wisconsin families. The characteristics of the respondents and their children are presented in Table I. Most (83.9%) respondents were the mother of the child. The average age of the child at the time of the survey was 6.9 (SD 5.4) years. Children from Arkansas were younger (4.9 years [SD 3.9]) compared with the

Discussion

The main findings from this study suggest that despite high use of primary and specialty care, CMC enter structured clinical care programs at tertiary care centers with a number of unmet health care service needs. Mental health needs for the child and family and respite care for the family were met the least upon enrollment. Enrollment in a targeted, structured clinical care program at a tertiary care center was associated with significant increases in met health service needs. The striking

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    D.K. was supported by the Translational Research Institute (UL1TR000039 and KL2TR000063) through the National Institutes of Health (NIH) National Center for Research Resources and the National Center for Advancing Translational Sciences. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. The authors declare no conflicts of interest.

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