Need and Unmet Need for Care Coordination Among Children With Mental Health Conditions WHAT’S KNOWN ON THIS SUBJECT: Although care coordination AUTHORS: Nicole M. Brown, MD, MPH, MHS,a Jeremy C. has been associated with lower health care costs and improved Green, PhD, MPhil,b Mayur M. Desai, PhD, MPH,a,c Carol C. outcomes for vulnerable children, little is known about the extent Weitzman, MD,d and Marjorie S. Rosenthal, MD, MPHa,c,d of need and factors associated with unmet need for care aRobert Wood Johnson Foundation Clinical Scholars Program coordination among children with mental health conditions. and dDepartment of Pediatrics, Yale School of Medicine, New Haven, Connecticut; bDepartment of Health Management and c WHAT THIS STUDY ADDS: Policy, Saint Louis University, St Louis, Missouri; and Department Children with mental health conditions of Chronic Disease Epidemiology, Yale School of Public Health, have substantial need and unmet need for care coordination. New Haven, Connecticut Unmet need is more likely for families with children with anxiety KEY WORDS disorder and less likely for those who report social support and care coordination, family-centered care, health care delivery, family-centered care. medical home, mental health ABBREVIATIONS ADHD—attention-deficit/hyperactivity disorder CI—confidence interval RR—relative risk Dr Brown conceptualized and designed the study, acquired the abstract data, analyzed and interpreted the data, and drafted the initial OBJECTIVE: To determine prevalence and correlates of need and unmet manuscript; Dr Green contributed to the design of the study, need for care coordination in a national sample of children with mental analyzed and interpreted the data, and revised the manuscript for important intellectual content; and Drs Desai, Weitzman, and health conditions. Rosenthal contributed to the design of the study, interpreted the METHODS: Using data from the 2007 National Survey of Children’s analysis, and revised the manuscript for important intellectual content. All authors approved the final manuscript as submitted. Health, we identified children aged 2 to 17 years with $1mentalhealth condition (attention-deficit/hyperactivity disorder, anxiety disorder, www.pediatrics.org/cgi/doi/10.1542/peds.2013-2590 conduct disorder, or depression) who had received $2typesof doi:10.1542/peds.2013-2590 preventive or subspecialty health services in the past year. We defined Accepted for publication Dec 18, 2013 2 outcome measures of interest: (1) prevalence of need for care Address correspondence to Nicole M. Brown, MD, MPH, MHS, The Children’s Hospital at Montefiore, Family Care Center, 3444 coordination; and (2) prevalence of unmet need for care coordination Kossuth Ave, Bronx, NY 10467. E-mail: nicolebr@montefiore.org in those with a need. Logistic regression models were used to estimate PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). associations of clinical, sociodemographic, parent psychosocial, and Copyright © 2014 by the American Academy of Pediatrics health care characteristics with the outcome measures. FINANCIAL DISCLOSURE: The authors have indicated they have RESULTS: In our sample (N = 7501, representing an estimated 5 750 000 no financial relationships relevant to this article to disclose. children), the prevalence of having any need for care coordination FUNDING: Dr Brown was supported by the Robert Wood was 43.2%. Among parents reporting a need for care coordination, Johnson Foundation Clinical Scholars Program, and Dr Green the prevalence of unmet need was 41.2%. Higher risk of unmet need was supported by an Agency for Healthcare Research and Quality T32 training grant. for care coordination was associated with child anxiety disorder, POTENTIAL CONFLICT OF INTEREST: The authors have indicated parenting stress, lower income, and public or no insurance. Parents they have no potential conflicts of interest to disclose. reporting social support and receipt of family-centered care had a lower risk of unmet need for care coordination. CONCLUSIONS: Approximately 40% of parents of children with mental health conditions who reported a need for care coordination also reported that their need was unmet. Delivery of family-centered care and enhancing family supports may help to reduce unmet need for care coordination in this vulnerable population. Pediatrics 2014;133:e530–e537 e530 BROWN et al Downloaded from www.aappublications.org/news at Princeton University on November 14, 2019 ARTICLE Although one-quarter of patients seen in population.16 An enhanced understanding a sequence of 3 questions about pro- pediatric primary care settings have of which patients are most likely to vision of care coordination: “Does a chronic mental health condition,1 only have suboptimal care coordination anyone help you arrange or coordinate 1 in 5 receive mental health treatment.2 experiences is critical to help target care among the different doctors that These children and their families are limited resources and design co- the child uses?”; “During the past 12 more likely to have trouble accessing ordination strategies within health months, have you felt you could have specialty care for comorbid medical homes and other service delivery set- used extra help arranging or co- conditions, and they often experience tings. Accordingly, we sought to de- ordinating the child’s care among the social complexities that demand co- termine the prevalence and correlates different health care providers or ordination across multiple systems of of unmet need for care coordination services?”; and “During the past 12 care.3 Without access to processes and in a national sample of children with months, how often did you get as much services that effectively bridge their mental health conditions. help as you wanted with arranging or mental health, medical, and social needs, coordinating care? Would you say children with mental health conditions METHODS never, sometimes, or usually?” are at high risk for unnecessary hospi- Data Source and Study Sample We created 3 mutually exclusive cate- talizations and emergency department gories of need based on parents’ use,4 suboptimal academic outcomes,5 Data were obtained from the 2007 Na- responses: no need, met need, and ’ 18 involvement with the child welfare and tional Survey of Childrens Health, unmet need (Fig 1). Those who reported criminal justice systems,3 and death a population-based, cross-sectional that no one helped them coordinate 3,5 from suicide. telephone survey that queries parents their child’s care and that they did not Through authority granted by the Pa- or other primary caregivers about need extra help were categorized as ’ tientProtectionandAffordableCareAct, a selected childs health, family char- having no need for care coordination. stateMedicaidprogramsandproviders acteristics, and about their need for, Met need was defined as either: (1) may establish “health homes” for in- and use of, health services. The study having someone who helped with co- dividuals with chronic conditions.6 sample for this analysis of need and ordinating care and not needing extra Health homes are expected to provide unmet need for care coordination in- help; or (2) needing extra help and cluded children aged 2 to 17 years who: a cost-effective model of interprofessional usually receiving as much help as (1) had at least 1 of 4 chronic mental collaboration for individuals with wanted. Lastly, unmet need was defined health conditions (attention-deficit/ chronic physical and mental health as only sometimes or never receiving hyperactivity disorder [ADHD], anxiety conditions.7 Care coordination, “a pro- as much help as wanted with co- disorder, conduct disorder, or de- cess that links children and youth with ordinating their child’s care. special health care needs and their pression) that had lasted or was expected to last $12 months; and (2) families with appropriate services and Sociodemographic, Clinical, and used $2 health care services (pre- resources in a coordinated effort to Parent Psychosocial Characteristics ventive medical care, preventive dental achieve good health,”8 has been de- We examined sociodemographic, clini- care, mental health care, and sub- scribed as an essential element of the cal, and parent psychosocial charac- specialty care) in the past 12 months. health home. Care coordination has teristics that may influence need for been shown to be cost-effective,9 re- TheYaleSchoolofMedicineInstitutional care coordination services.10,11,20 Our duce emergency department use and Review Board found the study exempt selection of variables was guided by the hospitalizations,10 improve health out- from human subject review. Behavioral Model for Vulnerable Pop- comes,11 enhance efficiency of sys- ulations.21 Sociodemographic charac- Measures tems,12 help patients and families more teristics included child’sage,gender, effectively use the health care sys- Need and Unmet Need for Care race/ethnicity, and insurance status tem,12,13 and improve satisfaction with Coordination (private, public, or uninsured); house- the care experience.14 Although there The outcomes of interest were as fol- hold income (based on percentage of will be increased national investments lows: (1) prevalence of need for care the federal poverty level); primary lan- in care coordination targeting children coordination; and (2) prevalence of guage spoken in the home (English or with mental health conditions,15 little is unmet need for care coordination. non-English); and family structure known about