Dennis Z Kuo1, Jay G Berry2, Laurie Glader2, Melinda J Morin3, Sarah Johaningsmeir4, John Gordon4. 1. Center for Applied Research and Evaluation, Arkansas Children's Hospital, University of Arkansas for Medical Sciences, Little Rock, AR; Arkansas Children's Hospital Research Institute, Little Rock, AR. Electronic address: dzkuo@uams.edu. 2. Division of General Pediatrics, Department of Medicine, Boston Children's Hospital, Harvard Medical School, Boston, MA. 3. Institute of Medicine, Washington, DC. 4. Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI.
Abstract
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.
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.
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