Original ArticleHealth Services and Health Care Needs Fulfilled by Structured Clinical Programs for Children with Medical Complexity
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
References (33)
- et al.
Hospitalist care of the medically complex child
Pediatr Clin North Am
(2005) - et al.
Unmet need for therapy services, assistive devices, and related services: data from the national survey of children with special health care needs
Ambul Pediatr
(2004) - et al.
Benefits of care coordination for children with complex disease: a pilot medical home project in a resident teaching clinic
J Pediatr
(2010) - et al.
Characteristics of hospitalizations for patients who utilize a structured clinical-care program for children with medical complexity
J Pediatr
(2011) - et al.
A new definition of children with special health care needs
Pediatrics
(1998) The transformation of child health in the United States
Health Aff (Millwood)
(2004)- et al.
Unmet health care needs among CSHCN with neurologic conditions
Pediatrics
(2009) - et al.
Geographic disparities in access to the medical home among US CSHCN
Pediatrics
(2009) - et al.
What factors are associated with state performance on provision of transition services to CSHCN?
Pediatrics
(2009) Oral health care in CSHCN: state Medicaid policy considerations
Pediatrics
(2009)
A national profile of caregiver challenges among more medically complex children with special health care needs
Arch Pediatr Adolesc Med
Inequities in health care needs for children with medical complexity
Health Aff (Millwood)
Bridging the divide between families and health professionals' perspectives on family-centered care
Health Expect
Unmet need and problems accessing specialty medical and related services among children with special health care needs
Matern Child Health J
Unmet need for routine and specialty care: data from the National Survey of Children With Special Health Care Needs
Pediatrics
Implementing community-based systems of services for children and youths with special health care needs: how well are we doing?
Pediatrics
Cited by (65)
Feasibility of Post-hospitalization Telemedicine Video Visits for Children With Medical Complexity
2022, Journal of Pediatric Health CareThe Goldilocks problem: Healthcare delivery models for children with medical complexity
2021, Current Problems in Pediatric and Adolescent Health CareWhat do family caregivers do when managing medications for their children with medical complexity?
2020, Applied ErgonomicsCitation Excerpt :To address families’ true needs, a partnership approach that promotes meaningful family engagement and shared decision-making is needed (Kuo et al., 2012). Care coordination programs such as the one studied and many others around the country are important components of such efforts (Kuo et al., 2016). However, such programs can only do so much given their limited financial resources and the number of families they can support at any given time.
Parents’ Assessment of an Advanced-Practice Nurse and Care Coordination Assistant Model Medical Care Coordination Program for Children With Medical Complexity
2020, Journal of Pediatric Health CareCitation Excerpt :However, there are many barriers to creating medical homes for CMC within primary care practices (Cohen, Friedman, Nicholas, Adams, & Rosenbaum, 2008). Community-based primary care physicians (PCPs) report limited capacity to care for CMC because of the high level of health care and supportive services required (Cohen et al., 2012; Kuo et al., 2016). Furthermore, it may be challenging for primary care providers to provide care coordination for CMC because they are frequently hospitalized and receive much of their care from hospitalists and sub-specialists.
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.