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A framework for developing healthcare quality measures for children and youth in foster care
Children and Youth Services Review 58 (2015) 146–152
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Children and Youth Services Review journal homepage: www.elsevier.com/locate/childyouth
A framework for developing healthcare quality measures for children and youth in foster care Katherine J. Deans a, Peter C. Minneci a, Kristine M. Nacion a, Jonathan D. Thackeray b, Sarah Hudson Scholle c, Kelly J. Kelleher a,⁎ a b c
Center for Surgical Outcomes Research, Center for Innovation in Pediatric Practice, The Research Institute at Nationwide Children's Hospital, 700 Children's Drive, Columbus, OH 43205, USA Department of Pediatrics, Nationwide Children's Hospital, 700 Children's Drive, Columbus, OH 43205, USA National Committee for Quality Assurance, 1100 13th St, NW, Suite 1000, Washington DC 20005, USA
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Article history: Received 16 March 2015 Received in revised form 16 September 2015 Accepted 16 September 2015 Available online 21 September 2015 Keywords: Foster care Quality measures Healthcare Youth Children
a b s t r a c t Purpose: To develop a temporal framework that can be utilized to develop quality measures for children and youth in foster care. Methods: A targeted assessment of published scientific articles, guidelines, evidence reviews, reports, and relevant websites with health recommendations for children in foster care was reviewed to provide supporting documentation for the framework. Results: Numerous recommendations for quality measures in children are relevant for children in foster care and additional measures have been proposed. From the moment a child enters foster care, through changes in foster home and eventual exit from foster care, the evidence suggests high variability and low adherence to recommended healthcare services. Conclusions: A set of nationally standardized measures are needed to inform child welfare agencies and policy makers about the gaps in care that need to be addressed to improve the quality of care for this population. The framework and domains presented in this manuscript offer a basis by which to develop a comprehensive set of quality measures for foster care children. © 2015 Elsevier Ltd. All rights reserved.
1. Introduction According to the U.S. Department of Health and Human Services Adoption and Foster Care Analysis and Reporting System (AFCARS), there were 397,122 children in foster care during fiscal year 2012 (U.S. Department of Health and Human Services, 2013). Due to the circumstances that lead to a child's placement in foster care and problems in coordination of care, these children are at increased risk for unmet medical, developmental and behavioral conditions (Pecora, 2005). Compared with children from the same socioeconomic background, children entering foster care have higher rates of chronic physical disabilities, emotional and behavioral problems, and developmental delay (Committee on Early Childhood, Adoption, and Dependent Care, 2002). Nearly half of the children in foster care have chronic medical conditions and 40–80% have behavioral or mental health problems (Clausen, Landsverk, Ganger, Chadwick, & Litrownik, 1998; Garland, Landsverk, & Lau, 2003; Glisson, 1994; Halfon, Mendonca, & Berkowitz, 1995; Simms, 1989; Takayama, Wolfe, & Coulter, 1998; Trupin, Tarico,
⁎ Corresponding author at: Room JW 4996, Children's Research Institute, 700 Children's Drive, Columbus, OH 43205, USA. E-mail address: [email protected] (K.J. Kelleher).
http://dx.doi.org/10.1016/j.childyouth.2015.09.012 0190-7409/© 2015 Elsevier Ltd. All rights reserved.
Low, Jemelka, & McClellan, 1993; U.S. Government Accountability Office, 1995; Urquiza, Wirtz, Peterson, & Singer, 1994). Despite clear evidence about these needs, accountability for healthcare access and quality is often divided among various agencies, and the measures for monitoring the quality of care are limited. Although, state and county child welfare programs are responsible for the care of youth in foster care, the state Medicaid programs administer insurance coverage for the healthcare of these children. The Fostering Connections to Success and Increasing Adoptions Act of 2008 requires state welfare agencies to work with pediatricians and other experts in child care to develop a coordinated strategy to respond to the healthcare needs of children in foster care placement; however, a recent Government Accountability Office (GAO) report noted the limitations in the implementation of this Act (H.R. 6893-110th Congress, 2008; U.S. Government Accountability Office, 2014). In particular, metrics for monitoring the provision of ongoing preventive care and early identification and treatment of medical disabilities appear underdeveloped. The purpose of this paper is to propose a practical framework to conceptualize healthcare needs of the foster care population and to identify opportunities for quality measure development. Previous reports recommended a broad framework for comprehensive health and social services management but not measurement for
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children and youth in foster care (Halfon et al., 1995; Halfon & Hochstein, 2002). To identify possible quality measures for foster child healthcare, we used a similar approach of considering the three time periods of child welfare engagement during which recommendations for particular healthcare services are more likely to exist: (1) entry into foster care, (2) ongoing foster care, and (3) foster home change or exit. Conceptualizing foster care as a series of time periods may help to determine the needs of children at each stage, and identify standardized measures that can be used to gauge quality of healthcare during each of these stages. Within each of these time periods are proposed domains of care including comprehensive well-child assessments and targeted screening for traumainformed services. This paper provides key literature in support of our framework and these specific domains. 2. Methods Our framework and its content domains were conceived from literature aimed at attending to the healthcare needs of children in foster care (Fig. 1). We conducted a targeted assessment of published scientific articles, guidelines, evidence reviews, reports, and relevant websites with attention to general foster care health recommendations. Of note, identifying specific behavioral treatments for foster care children with specific mental disorders was not the focus of this effort. Three independent staff members and a research librarian performed searches of the medical literature published between 2000 and 2014 in the English language. However, if no relevant article was found during these years, the search was expanded to include earlier years. Citations from the primary articles and related citations were also searched to ensure that no
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relevant citations were missed. Additional specific searches included the following: • Search for Existing Measures: Existing measures were searched using databases from the Agency for Healthcare Research & Quality's National Quality Measures Clearinghouse, the Center for Quality Assessment and Improvement in Mental Health, and the National Quality Forum. • Search for Guidelines: Guidelines were searched using the National Guidelines Clearinghouse, the Guidelines International Network, the American Academy of Pediatrics (AAP), the American Academy of Child & Adolescent Psychiatry, and PubMed. Out of scope and duplicate guidelines (e.g., guidelines that were published in multiple journals or found in multiple databases) were excluded. Where multiple editions of the guidelines were available, the most recently published edition was used. Guidelines published outside of the United States (US) were also included if it was believed that insufficient evidence from the US existed. • Search for Evidence Reviews: Literature was searched using PsychInfo, the Cumulative Index to Nursing and Allied Health Literature, the Cochrane Database of Systematic Reviews, PubMed and Google Scholar. Out of scope and duplicate articles were excluded. The Annie E Casey Foundations, Center for Health Care Strategies and US Government websites were also searched for relevant publications. Medical textbooks were also used as evidence support when no relevant articles were found. All types of studies (meta-analyses, reviews, randomized controlled trials, prospective/retrospective studies and chart reviews) were
Fig. 1. Foster care quality measure framework.
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included due to the limited number of systematic reviews and metaanalyses found for this specific topic and population. One hundred and one articles were reviewed for final inclusion in creating the framework. We constructed a general framework based on the compiled literature and the identified gaps in practice and presented it to an advisory panel. This panel consisted of foster care alumni, national policy makers, state child welfare and Medicaid officials, health plan staff, and academic researchers. After a thorough discussion of domains deemed most important and relevant to this population, the advisory panel recommended some adjustments to the framework and domains which were adjusted accordingly. Some suggestions included: 1) recognition that care coordination topics were relevant at both foster care placement change as well as foster care exit, 2) determining how existing measures such as those in the Medicaid Children's core set can be applied to the foster care population and 3) expansion of topics for behavioral healthcare beyond antipsychotic medication use. 3. Results 3.1. Entry into foster care: Comprehensive intake assessment 3.1.1. Rationale Foster children are likely to suffer from specific trauma-related injuries and disorders and may be at risk for missed preventive care; thus, timely screening and assessment are critical to formulating a plan to meet the immediate needs and improve the long-term health and well-being of youth in foster care. Timely screening that involves a comprehensive assessment is necessary to identify signs of abuse, treat acute illnesses, identify lapses in well-child care, and ensure that appropriate, subsequent care is performed (Leslie, Kelleher, Burns, Landsverk, & Rolls, 2003). 3.1.2. Guidelines While brief emergency assessments upon placement into foster care are mandatory nationally, the AAP recommends that within 30 days of a child's placement, a comprehensive health assessment should be performed by a pediatrician who is knowledgeable about the treatment of children in foster care (Committee on Early Childhood, Adoption, and Dependent Care, 2002; American Academy of Pediatrics Committee on Early Childhood and Adoption and Dependent Care, 2000). The American Academy of Child and Adolescent Psychiatry (AACAP), in conjunction with the Child Welfare League of America (CWLA), recommends that a comprehensive mental health assessment be performed within 60 days of placement, or sooner if the child's needs are found to be severe during the screening process (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). The comprehensive assessment should incorporate use of developmentally appropriate techniques and tools (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). Suggested screening tests are enumerated in the AAP Recommendations for Preventive Pediatric Health Care and include a medical history, measurements of head circumference, weight, length, body mass index and blood pressure, vision and hearing screenings, developmental screening and surveillance, psychosocial/behavioral assessments, immunizations, and oral health assessment (Committee on Practice Ambulatory Medicine, Bright Futures Steering Committee, 2007). 3.1.3. Gaps in current practice Interviews conducted with a national sampling of child welfare agencies concluded that despite the publication of national guidelines regarding assessment, these agencies often lack comprehensive policies or routine practices that address the health needs of children entering out-of-home care (Leslie, Hurlburt, et al., 2003). Only 42.6% provided comprehensive physical, mental health, and developmental examinations (Leslie, Hurlburt, et al., 2003). The Center for Health Care Strategies
conducted a 50-state survey to assess the extent to which welfare agencies require physical, behavioral and oral health screening and assessments for youths entering foster care. They found that virtually all states require an initial screening, but state mandates for in-depth assessments are less rigorous (Allen, 2010). The percentages of states requiring a physical, behavioral, or oral health assessment within 30 days of entry into foster care as recommended by the AAP were 63%, 52% and 43% respectively (Allen, 2010). 3.2. Ongoing foster care: Routine preventive care 3.2.1. Rationale Foster care should be considered an opportunity in which the child can heal from past trauma (Szilagyi, 2012). Medical conditions present before entry into foster care, trauma-related symptoms, and problems adapting to the foster home or adjusting to separation from the child's family need to be addressed. Many children enter foster care with inadequate preventive visits, ill-managed chronic conditions, a high prevalence of complex trauma exposure (i.e. physical abuse, sexual abuse, emotional abuse, neglect, domestic violence), and have mental or behavioral problems (Leslie, Kelleher, et al., 2003; Szilagyi, 2012; Greeson et al., 2011). Given the vulnerability of the foster care population, healthcare providers must periodically reassess the health status of these children to ensure their ongoing safety and well-being (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). 3.2.2. Guidelines A foster child's medical care should include ongoing primary care and periodic reassessments of their health, development, and emotional status to determine the need for additional services and interventions (Committee on Early Childhood, Adoption, and Dependent Care, 2002). The AAP recommends, at a minimum, children in foster care to have reassessments monthly for the first 6 months of age, every 2 months for ages 6 to 12 months, every 3 months for ages 1 to 2 years, and every 6 months for ages 2 through adolescence. Thus, these recommendations call for more frequent assessment than recommendations for children who are not in foster care (Committee on Early Childhood, Adoption, and Dependent Care, 2002). The Council on Accreditation (COA) also endorses coordinated healthcare services for each child in foster care, in order to ensure continuity of care and the receipt of comprehensive healthcare services (Council on Accreditation. Family Foster Care and Kinship Care (PA-FKC) standard, 2013). These health services should be age-appropriate and include medical examinations according to well child guidelines, dental examinations every 6 months, developmental, mental health, and alcohol and drug screenings when indicated to identify the need for further diagnostic assessment and needed therapeutic and treatment services (Council on Accreditation. Family Foster Care and Kinship Care (PA-FKC) standard, 2013). The Early Periodic Screening, Diagnosis, and Treatment (EPSDT) program, a required benefit for children enrolled in Medicaid, calls for routine screening and follow up services similar to those proposed by AAP and the COA (Health Resources and Services Administration, U.S. Department of Health and Human Services). 3.2.3. Gaps in current practice Despite recommendations for physical and mental health assessments, many foster care children do not receive routine checkups (Rosenbach, 2001). In an examination of records of almost 2400 children in their first year in foster care, foster children received fewer overall outpatient services than did their Medicaid-eligible peers, with 27% of the foster children having no visits to any ambulatory care setting during the year even though current recommendations call for increased visits for them (Rubin, Alessandrini, Feudtner, Localio, & Hadley, 2004). Children of all ages in foster care exhibited increasing reliance on the emergency department for ambulatory care services
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(Rubin et al., 2004). Although services are available to children in foster care, receipt of services varies by state (Ritchie, 2005). A 2010 study found that over 75% of sampled foster care Medicaid-eligible children did not receive required EPSDT medical, vision or hearing services (Levinson, 2010). An earlier study of sampled Medicaid-enrolled children revealed similar results regarding receipt of all well-care visits (Hakim & Bye, 2001). The quality of care for ongoing medical problems such as asthma and diabetes, which are more common among foster children than other Medicaid children, has not been documented. 3.3. Ongoing foster care: Mental healthcare 3.3.1. Rationale Children in foster care are more likely to have mental health problems, alone or in combination with physical problems, than any other group receiving Medicaid (Rosenbach, 2001). 3.3.2. Guidelines Evaluations are recommended by the AAP to assess the development or exacerbation of issues at each health visit (Committee on Early Childhood, Adoption, and Dependent Care, 2002). The use of validated instruments is recommended to better capture these problems (Jee, Conn, et al., 2010; Jee, Szilagyi, et al., 2010; Jee et al., 2011). Components of mental health-care include screenings in pediatric offices, an established medical home where positive parenting strategies can be learned, evidence-based services and the use of psychotropic medication, if necessary (Szilagyi, 2012). Several practice parameters and guidelines recommend careful metabolic and neurological monitoring of side effects for children prescribed with an antipsychotic medication (American Academy of Child and Adolescent Psychiatry, 2001; American Academy of Child and Adolescent Psychiatry, 2009; Pringsheim, Panagiotopoulos, Davidson, & Ho, 2011; Findling, Drury, Jensen, & Rapoport, 2011). These include movement disorder assessments, body mass index, blood pressure, heart rate and laboratory tests (e.g. glucose, and lipid profiles) performed at baseline, and at regular intervals following the start of an atypical antipsychotic (Findling et al., 2011). 3.3.3. Gaps in current practice Even if initial screenings for mental disorders among foster children are performed, it is not always guaranteed that appropriate services will be delivered. Approximately 45.8% of children in foster care are at risk of behavioral and emotional problems with a potential need for mental health services, but less than half (46.6%) of 11–17 year olds and onethird (34.1%) of 18 month–10 year olds received specialty behavioral inpatient or outpatient services (Casanueva, Wilson, et al., 2012; Casanueva, Stambaugh, Tueller, Dolan, & Smith, 2012). While screening and subsequent referral increased the odds of receiving services, almost half of the children with unmet mental health needs did not receive services at all (Petrenko, Culhane, Garrido, & Taussig, 2011). Additionally, metabolic screenings for those on antipsychotics are low (b 32%) among children on both commercial and Medicaid health plans suggesting that recommendations are not being implemented (Haupt et al., 2009; Morrato, Newcomer, Allen, & Valuck, 2008; Morrato, Nicol, Maahs, et al., 2010). 3.4. Ongoing foster care: Trauma-related specialized care 3.4.1. Rationale Child maltreatment can result in either physical or emotional traumatic injuries. 3.4.2. Guidelines Due to the oftentimes traumatic situations leading to the removal of children from their homes, the AAP recommends that comprehensive assessments be performed to establish a treatment plan and ongoing
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monitoring of these children (American Academy of Pediatrics Committee on Early Childhood and Adoption and Dependent Care, 2000). These traumatic events can contribute to behavioral and developmental issues, especially as the trauma is continuously recalled (American Academy of Pediatrics et al., 2008). Evaluation of these children can be performed using validated instruments such as those used in the National Survey of Child and Adolescent Well-being (Casanueva, Stambaugh, et al., 2012). Within the realm of physical abuse, long bone fractures and traumatic brain injury (TBI) are highly suggestive of physical abuse (Bullock, Koval, Moen, Carney, & Spratt, 2009; Dubowitz & Lane, 2011; Dubowitz & Bennett, 2007; Kleinman, Perez-Rossello, Newton, Feldman, & Kleinman, 2011; Leventhal, Martin, & Asnes, 2008; Mulpuri, Slobogean, & Tredwell, 2011; van Rijn & Sieswerda-Hoogendoorn, 2012). The AAP recommends a thorough medical history and medical examination to ensure that suspicions of physical abuse and abusive head trauma are properly evaluated and managed (Christian & Block, 2009; Kellogg, 2007; Section on Radiology, American Academy of Pediatrics, 2009). A neurological assessment and complete radiographic skeletal survey, with a follow-up skeletal survey approximately 2 weeks after the initial study, be performed in children with skeletal injuries (Kellogg, 2007; Section on Radiology, American Academy of Pediatrics, 2009). Children with TBI are at high risk of developmental problems and should undergo developmental evaluations at each healthcare visit to diagnose and direct treatment of these problems. Recommendations for developmental screening are already encompassed in many of the AAP's publications (Committee on Early Childhood, Adoption, and Dependent Care, 2002; American Academy of Pediatrics Committee on Early Childhood and Adoption and Dependent Care, 2000; Committee on Practice Ambulatory Medicine, Bright Futures Steering Committee, 2007; Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, & Medical Home Initiatives for Children With Special Needs Project Advisory Committee, 2006). All recommendations advocate for the incorporation of developmental evaluations at each health visit, specifically recommending screening tests be performed when there is developmental concern and regularly at 9, 18 and 30 month visits (Council on Children With Disabilities et al., 2006). The AAP has recently updated its guideline on recommendations for evaluating sexual abuse cases. A physical examination, appropriate sexually transmitted infection and pregnancy prophylaxis when indicated, and a mental health evaluation should be performed (Jenny, Crawford-Jakubiak, & Committee on child abuse and neglect, 2013; Kellogg, & American Academy of Pediatrics Committee on child a, neglect, 2005; National Guideline Clearinghouse, 2010). Due to the nature of abuse, increased risk of developing multiple issues, such as posttraumatic stress disorder, depression, social phobias and high risk behaviors, warrant proper follow-up (Jenny et al., 2013). Assessments should include questions about suicidal or self-injurious thoughts and behaviors (Kellogg, & American Academy of Pediatrics Committee on child a, neglect, 2005).
3.4.3. Gaps in current practice Receipt of proper physical follow-up is variable. A retrospective review of pediatric hospitals within the Pediatric Hospital Information System reveals a high variability (from b 70%–N90%) in screening for fractures in children b2 years old who have a high likelihood of physical abuse (Wood et al., 2012). In the Children's Health After Trauma study, 38% of children who sustained a TBI did not receive any injury-related service 3 months post injury with the number increasing to 61% 12 months post injury, and children with Medicaid were more likely to report an unmet need than those with commercial insurance (Slomine et al., 2006). Among sexual abuse victims, a study performed among Rhode Island emergency departments found that many adolescents did not receive the AAP recommended tests and prophylaxes, and that
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testing and prophylaxis varied by type of emergency department (Merchant et al., 2008). Children in foster care also do not receive the emotional and behavioral care they need (Casanueva, Stambaugh, et al., 2012). A little over 40% of children 18 months to 17 years old received any behavioral health service, and comprehensive health assessments were performed by less than half of sampled child welfare agencies (Leslie, Hurlburt, et al., 2003; Casanueva, Stambaugh, et al., 2012). According to the National Survey of Child and Adolescent Well-Being conducted from 2009 to 2011, reported scores on cognitive capacity measures were lower among children who came into contact with the child welfare system than the general pediatric population (Casanueva, Wilson, et al., 2012). Specifically, 52.6% of 1–5 year olds in foster care had evidence of developmental problems and only 33.7% of these received early intervention services (Casanueva, Wilson, et al., 2012; Casanueva, Stambaugh, et al., 2012). Cognitive services were the most frequent type of unmet or unrecognized need among children who sustained a TBI (Slomine et al., 2006). 3.5. Foster home change or exit: Comprehensive reassessment and care coordination 3.5.1. Rationale According to AFCARS, 240,923 children exited foster care in fiscal year 2012 (U.S. Department of Health and Human Services, 2013). Up to 25% of children placed in foster care experience 3 or more changes in foster homes, and these placement changes are often accompanied by changes in physicians (Committee on Early Childhood, Adoption, and Dependent Care, 2002). Coordination and transfer of care are crucial to avoid missed and improper management of chronic conditions as well as early detection of new conditions. 3.5.2. Guidelines The AAP recommends reassessments at times of significant changes in placement such as changes in foster home placements as well as approaching reunification (Committee on Early Childhood, Adoption, and Dependent Care, 2002). To enhance continuity of care, an abbreviated health record, often called a medical passport, is suggested to ensure the transfer of essential health information (Committee on Early Childhood, Adoption, and Dependent Care, 2002). The COA recommends planning for foster care changes and exit; it endorses reassessment of needs and the development of an aftercare plan sufficiently in advance of case closing such that the child need not experience lapses or deficiencies in their care; this plan should specify services needed or desired, and the steps for obtaining these services (Council on Accreditation. Family Foster Care and Kinship Care (PA-FKC) standard, 2013). Prior to discharge from foster care, the child should receive assistance to maintain or obtain health insurance, health records, medical, dental, developmental, mental health, and substance use treatment services as needed (Council on Accreditation. Family Foster Care and Kinship Care (PA-FKC) standard, 2013). Youths aging out of foster care are especially vulnerable to information transfer problems because they may not have the skills to navigate the adult healthcare system on their own. Guidance is needed to aid the adolescent in understanding their health issues and link them with new adult primary care physician as well as behavioral and reproductive health services (Council on Foster Care Adoption and Kinship Care & Committee on Early Childhood, 2012). The AACAP in conjunction with the CWLA recommends that children that are about to leave the system, whether moving to self-sufficiency or returning home, should be reassessed (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). Those who need or desire further services for mental health issues or for their use of alcohol and other drugs should have adequate referral and follow-up plans in place to assure continuity of care (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). All parties involved in the child's care should
be notified of any follow-up appointments (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). It is important to note that sometimes placement changes occur with very short notice so it can be difficult to ensure that all parties are notified with an adequate amount of time. Despite the potential for short notice, these organizations have provided guidelines that account for continuous reassessment to update any changes in a child's health status prior to changes or exit from foster care. 3.5.3. Gaps in current practice One study indicates that as the number of placement changes increases, so does the rate of ED visits with about 75% of these visits occurring during the time period immediately after placement change (Rubin et al., 2004). Another study among children in foster care revealed a decrease in continuity of care compared to non-foster care children (DiGiuseppe & Christakis, 2003). Results from The National Survey of Children's Health indicate that among those who needed care coordination, 31% of foster children did not receive effective coordination, although foster children with special healthcare needs were more likely than foster children without special healthcare needs to receive care coordination (Toomey et al., 2013). Coordination of services is especially challenging for youth aging out of foster care as they are assumed to take responsibility for their own care yet lack the comprehensive healthcare coverage to do so in many situations (Council on Foster Care Adoption and Kinship Care & Committee on Early Childhood, 2012). Although foster youths have higher rates of chronic and behavioral conditions, only about half of youth that age out of foster care receive health coverage (Council on Foster Care Adoption and Kinship Care & Committee on Early Childhood, 2012). It is unclear to what role the Patient Protection and Affordable Care Act will play in improving this situation. 4. Discussion Children in foster care are an especially vulnerable population with complex health conditions, and although professional guidelines detail the actions needed to ensure their well-being, these guidelines are often not followed. From the moment a child enters foster care, through changes in foster home and eventual exit from foster care, the evidence suggests high variability and low adherence to recommended services. Many children do not receive the comprehensive assessment at entry into foster care, routine visits to the physician while in foster care, nor the appropriate care coordination as they change homes or exit from foster care. This is concerning due to the high rates of chronic conditions among these children that need continuous assessment and who will oftentimes lack medical insurance as they age out of foster care, but the lack of quality measures slows improvement in care. Our framework uses a temporal approach to categorize the services within domains of wellness and trauma-specific needs for children and youth in foster care. This framework is based on healthcare guidelines and can be used to identify potential measures to enable the monitoring and improvement in care for these children. Identification of measures can vary depending on the data source used. Potential sources of information regarding the foster care population include child welfare and Medicaid administrative databases, paper and electronic health records, hospital medical and survey data. Each data source provides its own strengths and limitations. Administrative data is a large, low cost source of information whose data can be extracted with relative ease but may not provide a complete assessment of the individual child's care. Medicaid administrative data are useful for tracking healthcare services, however extensive information on custodial arrangements and potential medical and emotional concerns related to the need for state custody are found only in administrative systems of the Child Welfare System. It is unclear whether information on healthcare services in child welfare systems is accurate and detailed and how this varies by county or state. Electronic medical
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record data has the potential to provide clinically robust information on healthcare needs and services, but is costly to extract and may lack key information that occurs outside of a single setting. These data sources are presented primarily from the viewpoint of medical providers and caseworkers in stark contrast with survey data. Surveys completed by youth, foster family caregivers or case managers may provide an alternative medical history as opposed to somewhat disjointed information found in medical records. Still, surveys can be expensive and timeconsuming and are largely dependent on the health literacy and retention of information by the respondent. In all likelihood, the use of multiple data sources merged at the level of the individual child, and studied across states or possibly foster care specific health plans, will provide the most informative evidence on the quality of healthcare in this unique population. This may be possible with the coordinated efforts of local healthcare institutions, local child welfare agencies, and state Medicaid programs. Records could be linked across these different data sources based on direct identifiers such as social security numbers or indirect identifiers such as date of birth, gender, and zip code, in order to make use of the combination of medical and administrative data that is needed to calculate these measures. Existing measures and the Children's Health Insurance Program Reauthorization Act of 2009 quality measures in the general Medicaid/ Children's Health Insurance Program population have set the stage for identifying quality measures specifically for foster children; however, new measures that address special needs of foster children and take into account entry and exit patterns with their varying eligibility will have to be considered. These new measures can ensure that agencies tasked with the care of foster youth have standard indicators for which they can gauge the quality of their services. This framework will hopefully help agencies to consider the variety of data sources at their fingertips and how each can be best utilized to supply information on foster care status, and improve upon current data at different times of care or within each domain. 5. Conclusion Children in foster care are an especially vulnerable population whose complex care requires greater planning, coordination and oversight than the care of the general pediatric population; however, there is currently no uniform way to do this. A set of nationally standardized measures are needed to inform child welfare agencies and policy makers about the gaps in care that need to be addressed to improve the quality and outcomes of care for this population. This manuscript offers a framework for guiding the development of a comprehensive set of quality measures for foster care children. The development and subsequent implementation of such a measure set will require leadership from foster care advocates, providers and policymakers as well as investment in methods for linking data that allow for sufficient and timely data sharing for the purposes of patient care and quality measurement and improvement while still protecting children's rights. A robust set of quality indicators that can guide child welfare agencies, policy makers, and healthcare practitioners is essential to improving the overall well-being of children under the care of child welfare services. Funding This project was supported by grant number U18HS020503 (PI: Scholle) from the Agency for Healthcare Research and Quality (AHRQ). The content is the responsibility of the authors and does not necessarily represent the official views of AHRQ. AHRQ had no involvement in the study design, collection, analysis and interpretation of data. Conflict of interest The authors declare no conflicts of interest.
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Petrenko, C. L. M., Culhane, S. E., Garrido, E. F., & Taussig, H. N. (2011). Do youth in out-ofhome care receive recommended mental health and educational services following screening evaluations? Children and Youth Services Review, 33(10), 1911–1918. Pringsheim, T., Panagiotopoulos, C., Davidson, J., & Ho, J. (2011). Evidence-based recommendations for monitoring safety of second generation antipsychotics in children and youth. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 20(3), 218. van Rijn, R. R., & Sieswerda-Hoogendoorn, T. (2012). Imaging child abuse: the bare bones. European Journal of Pediatrics, 171(2), 215–224. Ritchie, B. (2005). "Children's Use of Health Care Services While in Foster Care: Common Themes" Memorandum to Susan Orr, Associate Commissioner for the Children's Bureau, Administration for Childen and Families, and Dennis G. Smith, Director of Centers for Medicare and Medicaid Services. In. OEI-07-00-00645 ed. Washington, DC: U.S. Department of Health and Human Services, Office of the Inspector General. Rosenbach, M. (2001). Children in Foster Care: Challenges in Meeting Their Health Care Needs Through Medicaid. Cambridge, MA: Mathematica Policy Research: Mathematica Policy Research. Rubin, D. M., Alessandrini, E. A., Feudtner, C., Localio, A. R., & Hadley, T. (2004). Placement changes and emergency department visits in the first year of foster care. Pediatrics, 114(3), e354–e360. Section on Radiology, American Academy of Pediatrics (2009). Diagnostic imaging of child abuse. Pediatrics, 123(5), 1430–1435. Simms, M. D. (1989). The foster care clinic: A community program to identify treatment needs of children in foster care. Journal of Developmental and Behavioral Pediatrics, 10(3), 121–128. Slomine, B. S., McCarthy, M. L., Ding, R., MacKenzie, E. J., Jaffe, K. M., Aitken, M. E., et al. (2006). Health care utilization and needs after pediatric traumatic brain injury. Pediatrics, 117(4), e663–e674. Szilagyi, M. (2012). The pediatric role in the care of children in foster and kinship care. Pediatrics in Review/Academy of Pediatrics, 33(11), 496–507. Takayama, J. I., Wolfe, E., & Coulter, K. P. (1998). Relationship between reason for placement and medical findings among children in foster care. Pediatrics, 101(2), 201–207. Toomey, S. L., Chien, A. T., Elliott, M. N., Ratner, J., & Schuster, M. A. (2013). Disparities in unmet need for care coordination: The National Survey of Children's Health. Pediatrics, 131(2), 217–224. Trupin, E. W., Tarico, V. S., Low, B. P., Jemelka, R., & McClellan, J. (1993). Children on child protective service caseloads: Prevalence and nature of serious emotional disturbance. Child Abuse & Neglect, 17(3), 345–355. U.S. Department of Health and Human Services (2013). The AFCARS Report: Preliminary FY 2012 estimates as of November 2013. http://www.acf.hhs.gov/programs/cb/resource/ afcars-report-20 (Accessed December 11, 2013). U.S. Government Accountability Office (1995). Foster Care: Health needs of many young children are unknown and unmet. http://www.gao.gov/products/HEHS-95-114 (Accessed January 3, 2013). U.S. Government Accountability Office (2014). Foster Care: HHS needs to improve oversight of fostering connections act implementation. http://www.gao.gov/assets/670/663655. pdf (Accessed October 8, 2014). Urquiza, A. J., Wirtz, S. J., Peterson, M. S., & Singer, V. A. (1994). Screening and evaluating abused and neglected children entering protective custody. Child Welfare, 73(2), 155–171. Wood, J. N., Feudtner, C., Medina, S. P., Luan, X., Localio, R., & Rubin, D. M. (2012). Variation in occult injury screening for children with suspected abuse in selected US children's hospitals. Pediatrics, 130(5), 853–860.
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Children and Youth Services Review journal homepage: www.elsevier.com/locate/childyouth
A framework for developing healthcare quality measures for children and youth in foster care Katherine J. Deans a, Peter C. Minneci a, Kristine M. Nacion a, Jonathan D. Thackeray b, Sarah Hudson Scholle c, Kelly J. Kelleher a,⁎ a b c
Center for Surgical Outcomes Research, Center for Innovation in Pediatric Practice, The Research Institute at Nationwide Children's Hospital, 700 Children's Drive, Columbus, OH 43205, USA Department of Pediatrics, Nationwide Children's Hospital, 700 Children's Drive, Columbus, OH 43205, USA National Committee for Quality Assurance, 1100 13th St, NW, Suite 1000, Washington DC 20005, USA
a r t i c l e
i n f o
Article history: Received 16 March 2015 Received in revised form 16 September 2015 Accepted 16 September 2015 Available online 21 September 2015 Keywords: Foster care Quality measures Healthcare Youth Children
a b s t r a c t Purpose: To develop a temporal framework that can be utilized to develop quality measures for children and youth in foster care. Methods: A targeted assessment of published scientific articles, guidelines, evidence reviews, reports, and relevant websites with health recommendations for children in foster care was reviewed to provide supporting documentation for the framework. Results: Numerous recommendations for quality measures in children are relevant for children in foster care and additional measures have been proposed. From the moment a child enters foster care, through changes in foster home and eventual exit from foster care, the evidence suggests high variability and low adherence to recommended healthcare services. Conclusions: A set of nationally standardized measures are needed to inform child welfare agencies and policy makers about the gaps in care that need to be addressed to improve the quality of care for this population. The framework and domains presented in this manuscript offer a basis by which to develop a comprehensive set of quality measures for foster care children. © 2015 Elsevier Ltd. All rights reserved.
1. Introduction According to the U.S. Department of Health and Human Services Adoption and Foster Care Analysis and Reporting System (AFCARS), there were 397,122 children in foster care during fiscal year 2012 (U.S. Department of Health and Human Services, 2013). Due to the circumstances that lead to a child's placement in foster care and problems in coordination of care, these children are at increased risk for unmet medical, developmental and behavioral conditions (Pecora, 2005). Compared with children from the same socioeconomic background, children entering foster care have higher rates of chronic physical disabilities, emotional and behavioral problems, and developmental delay (Committee on Early Childhood, Adoption, and Dependent Care, 2002). Nearly half of the children in foster care have chronic medical conditions and 40–80% have behavioral or mental health problems (Clausen, Landsverk, Ganger, Chadwick, & Litrownik, 1998; Garland, Landsverk, & Lau, 2003; Glisson, 1994; Halfon, Mendonca, & Berkowitz, 1995; Simms, 1989; Takayama, Wolfe, & Coulter, 1998; Trupin, Tarico,
⁎ Corresponding author at: Room JW 4996, Children's Research Institute, 700 Children's Drive, Columbus, OH 43205, USA. E-mail address: [email protected] (K.J. Kelleher).
http://dx.doi.org/10.1016/j.childyouth.2015.09.012 0190-7409/© 2015 Elsevier Ltd. All rights reserved.
Low, Jemelka, & McClellan, 1993; U.S. Government Accountability Office, 1995; Urquiza, Wirtz, Peterson, & Singer, 1994). Despite clear evidence about these needs, accountability for healthcare access and quality is often divided among various agencies, and the measures for monitoring the quality of care are limited. Although, state and county child welfare programs are responsible for the care of youth in foster care, the state Medicaid programs administer insurance coverage for the healthcare of these children. The Fostering Connections to Success and Increasing Adoptions Act of 2008 requires state welfare agencies to work with pediatricians and other experts in child care to develop a coordinated strategy to respond to the healthcare needs of children in foster care placement; however, a recent Government Accountability Office (GAO) report noted the limitations in the implementation of this Act (H.R. 6893-110th Congress, 2008; U.S. Government Accountability Office, 2014). In particular, metrics for monitoring the provision of ongoing preventive care and early identification and treatment of medical disabilities appear underdeveloped. The purpose of this paper is to propose a practical framework to conceptualize healthcare needs of the foster care population and to identify opportunities for quality measure development. Previous reports recommended a broad framework for comprehensive health and social services management but not measurement for
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children and youth in foster care (Halfon et al., 1995; Halfon & Hochstein, 2002). To identify possible quality measures for foster child healthcare, we used a similar approach of considering the three time periods of child welfare engagement during which recommendations for particular healthcare services are more likely to exist: (1) entry into foster care, (2) ongoing foster care, and (3) foster home change or exit. Conceptualizing foster care as a series of time periods may help to determine the needs of children at each stage, and identify standardized measures that can be used to gauge quality of healthcare during each of these stages. Within each of these time periods are proposed domains of care including comprehensive well-child assessments and targeted screening for traumainformed services. This paper provides key literature in support of our framework and these specific domains. 2. Methods Our framework and its content domains were conceived from literature aimed at attending to the healthcare needs of children in foster care (Fig. 1). We conducted a targeted assessment of published scientific articles, guidelines, evidence reviews, reports, and relevant websites with attention to general foster care health recommendations. Of note, identifying specific behavioral treatments for foster care children with specific mental disorders was not the focus of this effort. Three independent staff members and a research librarian performed searches of the medical literature published between 2000 and 2014 in the English language. However, if no relevant article was found during these years, the search was expanded to include earlier years. Citations from the primary articles and related citations were also searched to ensure that no
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relevant citations were missed. Additional specific searches included the following: • Search for Existing Measures: Existing measures were searched using databases from the Agency for Healthcare Research & Quality's National Quality Measures Clearinghouse, the Center for Quality Assessment and Improvement in Mental Health, and the National Quality Forum. • Search for Guidelines: Guidelines were searched using the National Guidelines Clearinghouse, the Guidelines International Network, the American Academy of Pediatrics (AAP), the American Academy of Child & Adolescent Psychiatry, and PubMed. Out of scope and duplicate guidelines (e.g., guidelines that were published in multiple journals or found in multiple databases) were excluded. Where multiple editions of the guidelines were available, the most recently published edition was used. Guidelines published outside of the United States (US) were also included if it was believed that insufficient evidence from the US existed. • Search for Evidence Reviews: Literature was searched using PsychInfo, the Cumulative Index to Nursing and Allied Health Literature, the Cochrane Database of Systematic Reviews, PubMed and Google Scholar. Out of scope and duplicate articles were excluded. The Annie E Casey Foundations, Center for Health Care Strategies and US Government websites were also searched for relevant publications. Medical textbooks were also used as evidence support when no relevant articles were found. All types of studies (meta-analyses, reviews, randomized controlled trials, prospective/retrospective studies and chart reviews) were
Fig. 1. Foster care quality measure framework.
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included due to the limited number of systematic reviews and metaanalyses found for this specific topic and population. One hundred and one articles were reviewed for final inclusion in creating the framework. We constructed a general framework based on the compiled literature and the identified gaps in practice and presented it to an advisory panel. This panel consisted of foster care alumni, national policy makers, state child welfare and Medicaid officials, health plan staff, and academic researchers. After a thorough discussion of domains deemed most important and relevant to this population, the advisory panel recommended some adjustments to the framework and domains which were adjusted accordingly. Some suggestions included: 1) recognition that care coordination topics were relevant at both foster care placement change as well as foster care exit, 2) determining how existing measures such as those in the Medicaid Children's core set can be applied to the foster care population and 3) expansion of topics for behavioral healthcare beyond antipsychotic medication use. 3. Results 3.1. Entry into foster care: Comprehensive intake assessment 3.1.1. Rationale Foster children are likely to suffer from specific trauma-related injuries and disorders and may be at risk for missed preventive care; thus, timely screening and assessment are critical to formulating a plan to meet the immediate needs and improve the long-term health and well-being of youth in foster care. Timely screening that involves a comprehensive assessment is necessary to identify signs of abuse, treat acute illnesses, identify lapses in well-child care, and ensure that appropriate, subsequent care is performed (Leslie, Kelleher, Burns, Landsverk, & Rolls, 2003). 3.1.2. Guidelines While brief emergency assessments upon placement into foster care are mandatory nationally, the AAP recommends that within 30 days of a child's placement, a comprehensive health assessment should be performed by a pediatrician who is knowledgeable about the treatment of children in foster care (Committee on Early Childhood, Adoption, and Dependent Care, 2002; American Academy of Pediatrics Committee on Early Childhood and Adoption and Dependent Care, 2000). The American Academy of Child and Adolescent Psychiatry (AACAP), in conjunction with the Child Welfare League of America (CWLA), recommends that a comprehensive mental health assessment be performed within 60 days of placement, or sooner if the child's needs are found to be severe during the screening process (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). The comprehensive assessment should incorporate use of developmentally appropriate techniques and tools (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). Suggested screening tests are enumerated in the AAP Recommendations for Preventive Pediatric Health Care and include a medical history, measurements of head circumference, weight, length, body mass index and blood pressure, vision and hearing screenings, developmental screening and surveillance, psychosocial/behavioral assessments, immunizations, and oral health assessment (Committee on Practice Ambulatory Medicine, Bright Futures Steering Committee, 2007). 3.1.3. Gaps in current practice Interviews conducted with a national sampling of child welfare agencies concluded that despite the publication of national guidelines regarding assessment, these agencies often lack comprehensive policies or routine practices that address the health needs of children entering out-of-home care (Leslie, Hurlburt, et al., 2003). Only 42.6% provided comprehensive physical, mental health, and developmental examinations (Leslie, Hurlburt, et al., 2003). The Center for Health Care Strategies
conducted a 50-state survey to assess the extent to which welfare agencies require physical, behavioral and oral health screening and assessments for youths entering foster care. They found that virtually all states require an initial screening, but state mandates for in-depth assessments are less rigorous (Allen, 2010). The percentages of states requiring a physical, behavioral, or oral health assessment within 30 days of entry into foster care as recommended by the AAP were 63%, 52% and 43% respectively (Allen, 2010). 3.2. Ongoing foster care: Routine preventive care 3.2.1. Rationale Foster care should be considered an opportunity in which the child can heal from past trauma (Szilagyi, 2012). Medical conditions present before entry into foster care, trauma-related symptoms, and problems adapting to the foster home or adjusting to separation from the child's family need to be addressed. Many children enter foster care with inadequate preventive visits, ill-managed chronic conditions, a high prevalence of complex trauma exposure (i.e. physical abuse, sexual abuse, emotional abuse, neglect, domestic violence), and have mental or behavioral problems (Leslie, Kelleher, et al., 2003; Szilagyi, 2012; Greeson et al., 2011). Given the vulnerability of the foster care population, healthcare providers must periodically reassess the health status of these children to ensure their ongoing safety and well-being (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). 3.2.2. Guidelines A foster child's medical care should include ongoing primary care and periodic reassessments of their health, development, and emotional status to determine the need for additional services and interventions (Committee on Early Childhood, Adoption, and Dependent Care, 2002). The AAP recommends, at a minimum, children in foster care to have reassessments monthly for the first 6 months of age, every 2 months for ages 6 to 12 months, every 3 months for ages 1 to 2 years, and every 6 months for ages 2 through adolescence. Thus, these recommendations call for more frequent assessment than recommendations for children who are not in foster care (Committee on Early Childhood, Adoption, and Dependent Care, 2002). The Council on Accreditation (COA) also endorses coordinated healthcare services for each child in foster care, in order to ensure continuity of care and the receipt of comprehensive healthcare services (Council on Accreditation. Family Foster Care and Kinship Care (PA-FKC) standard, 2013). These health services should be age-appropriate and include medical examinations according to well child guidelines, dental examinations every 6 months, developmental, mental health, and alcohol and drug screenings when indicated to identify the need for further diagnostic assessment and needed therapeutic and treatment services (Council on Accreditation. Family Foster Care and Kinship Care (PA-FKC) standard, 2013). The Early Periodic Screening, Diagnosis, and Treatment (EPSDT) program, a required benefit for children enrolled in Medicaid, calls for routine screening and follow up services similar to those proposed by AAP and the COA (Health Resources and Services Administration, U.S. Department of Health and Human Services). 3.2.3. Gaps in current practice Despite recommendations for physical and mental health assessments, many foster care children do not receive routine checkups (Rosenbach, 2001). In an examination of records of almost 2400 children in their first year in foster care, foster children received fewer overall outpatient services than did their Medicaid-eligible peers, with 27% of the foster children having no visits to any ambulatory care setting during the year even though current recommendations call for increased visits for them (Rubin, Alessandrini, Feudtner, Localio, & Hadley, 2004). Children of all ages in foster care exhibited increasing reliance on the emergency department for ambulatory care services
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(Rubin et al., 2004). Although services are available to children in foster care, receipt of services varies by state (Ritchie, 2005). A 2010 study found that over 75% of sampled foster care Medicaid-eligible children did not receive required EPSDT medical, vision or hearing services (Levinson, 2010). An earlier study of sampled Medicaid-enrolled children revealed similar results regarding receipt of all well-care visits (Hakim & Bye, 2001). The quality of care for ongoing medical problems such as asthma and diabetes, which are more common among foster children than other Medicaid children, has not been documented. 3.3. Ongoing foster care: Mental healthcare 3.3.1. Rationale Children in foster care are more likely to have mental health problems, alone or in combination with physical problems, than any other group receiving Medicaid (Rosenbach, 2001). 3.3.2. Guidelines Evaluations are recommended by the AAP to assess the development or exacerbation of issues at each health visit (Committee on Early Childhood, Adoption, and Dependent Care, 2002). The use of validated instruments is recommended to better capture these problems (Jee, Conn, et al., 2010; Jee, Szilagyi, et al., 2010; Jee et al., 2011). Components of mental health-care include screenings in pediatric offices, an established medical home where positive parenting strategies can be learned, evidence-based services and the use of psychotropic medication, if necessary (Szilagyi, 2012). Several practice parameters and guidelines recommend careful metabolic and neurological monitoring of side effects for children prescribed with an antipsychotic medication (American Academy of Child and Adolescent Psychiatry, 2001; American Academy of Child and Adolescent Psychiatry, 2009; Pringsheim, Panagiotopoulos, Davidson, & Ho, 2011; Findling, Drury, Jensen, & Rapoport, 2011). These include movement disorder assessments, body mass index, blood pressure, heart rate and laboratory tests (e.g. glucose, and lipid profiles) performed at baseline, and at regular intervals following the start of an atypical antipsychotic (Findling et al., 2011). 3.3.3. Gaps in current practice Even if initial screenings for mental disorders among foster children are performed, it is not always guaranteed that appropriate services will be delivered. Approximately 45.8% of children in foster care are at risk of behavioral and emotional problems with a potential need for mental health services, but less than half (46.6%) of 11–17 year olds and onethird (34.1%) of 18 month–10 year olds received specialty behavioral inpatient or outpatient services (Casanueva, Wilson, et al., 2012; Casanueva, Stambaugh, Tueller, Dolan, & Smith, 2012). While screening and subsequent referral increased the odds of receiving services, almost half of the children with unmet mental health needs did not receive services at all (Petrenko, Culhane, Garrido, & Taussig, 2011). Additionally, metabolic screenings for those on antipsychotics are low (b 32%) among children on both commercial and Medicaid health plans suggesting that recommendations are not being implemented (Haupt et al., 2009; Morrato, Newcomer, Allen, & Valuck, 2008; Morrato, Nicol, Maahs, et al., 2010). 3.4. Ongoing foster care: Trauma-related specialized care 3.4.1. Rationale Child maltreatment can result in either physical or emotional traumatic injuries. 3.4.2. Guidelines Due to the oftentimes traumatic situations leading to the removal of children from their homes, the AAP recommends that comprehensive assessments be performed to establish a treatment plan and ongoing
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monitoring of these children (American Academy of Pediatrics Committee on Early Childhood and Adoption and Dependent Care, 2000). These traumatic events can contribute to behavioral and developmental issues, especially as the trauma is continuously recalled (American Academy of Pediatrics et al., 2008). Evaluation of these children can be performed using validated instruments such as those used in the National Survey of Child and Adolescent Well-being (Casanueva, Stambaugh, et al., 2012). Within the realm of physical abuse, long bone fractures and traumatic brain injury (TBI) are highly suggestive of physical abuse (Bullock, Koval, Moen, Carney, & Spratt, 2009; Dubowitz & Lane, 2011; Dubowitz & Bennett, 2007; Kleinman, Perez-Rossello, Newton, Feldman, & Kleinman, 2011; Leventhal, Martin, & Asnes, 2008; Mulpuri, Slobogean, & Tredwell, 2011; van Rijn & Sieswerda-Hoogendoorn, 2012). The AAP recommends a thorough medical history and medical examination to ensure that suspicions of physical abuse and abusive head trauma are properly evaluated and managed (Christian & Block, 2009; Kellogg, 2007; Section on Radiology, American Academy of Pediatrics, 2009). A neurological assessment and complete radiographic skeletal survey, with a follow-up skeletal survey approximately 2 weeks after the initial study, be performed in children with skeletal injuries (Kellogg, 2007; Section on Radiology, American Academy of Pediatrics, 2009). Children with TBI are at high risk of developmental problems and should undergo developmental evaluations at each healthcare visit to diagnose and direct treatment of these problems. Recommendations for developmental screening are already encompassed in many of the AAP's publications (Committee on Early Childhood, Adoption, and Dependent Care, 2002; American Academy of Pediatrics Committee on Early Childhood and Adoption and Dependent Care, 2000; Committee on Practice Ambulatory Medicine, Bright Futures Steering Committee, 2007; Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, & Medical Home Initiatives for Children With Special Needs Project Advisory Committee, 2006). All recommendations advocate for the incorporation of developmental evaluations at each health visit, specifically recommending screening tests be performed when there is developmental concern and regularly at 9, 18 and 30 month visits (Council on Children With Disabilities et al., 2006). The AAP has recently updated its guideline on recommendations for evaluating sexual abuse cases. A physical examination, appropriate sexually transmitted infection and pregnancy prophylaxis when indicated, and a mental health evaluation should be performed (Jenny, Crawford-Jakubiak, & Committee on child abuse and neglect, 2013; Kellogg, & American Academy of Pediatrics Committee on child a, neglect, 2005; National Guideline Clearinghouse, 2010). Due to the nature of abuse, increased risk of developing multiple issues, such as posttraumatic stress disorder, depression, social phobias and high risk behaviors, warrant proper follow-up (Jenny et al., 2013). Assessments should include questions about suicidal or self-injurious thoughts and behaviors (Kellogg, & American Academy of Pediatrics Committee on child a, neglect, 2005).
3.4.3. Gaps in current practice Receipt of proper physical follow-up is variable. A retrospective review of pediatric hospitals within the Pediatric Hospital Information System reveals a high variability (from b 70%–N90%) in screening for fractures in children b2 years old who have a high likelihood of physical abuse (Wood et al., 2012). In the Children's Health After Trauma study, 38% of children who sustained a TBI did not receive any injury-related service 3 months post injury with the number increasing to 61% 12 months post injury, and children with Medicaid were more likely to report an unmet need than those with commercial insurance (Slomine et al., 2006). Among sexual abuse victims, a study performed among Rhode Island emergency departments found that many adolescents did not receive the AAP recommended tests and prophylaxes, and that
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testing and prophylaxis varied by type of emergency department (Merchant et al., 2008). Children in foster care also do not receive the emotional and behavioral care they need (Casanueva, Stambaugh, et al., 2012). A little over 40% of children 18 months to 17 years old received any behavioral health service, and comprehensive health assessments were performed by less than half of sampled child welfare agencies (Leslie, Hurlburt, et al., 2003; Casanueva, Stambaugh, et al., 2012). According to the National Survey of Child and Adolescent Well-Being conducted from 2009 to 2011, reported scores on cognitive capacity measures were lower among children who came into contact with the child welfare system than the general pediatric population (Casanueva, Wilson, et al., 2012). Specifically, 52.6% of 1–5 year olds in foster care had evidence of developmental problems and only 33.7% of these received early intervention services (Casanueva, Wilson, et al., 2012; Casanueva, Stambaugh, et al., 2012). Cognitive services were the most frequent type of unmet or unrecognized need among children who sustained a TBI (Slomine et al., 2006). 3.5. Foster home change or exit: Comprehensive reassessment and care coordination 3.5.1. Rationale According to AFCARS, 240,923 children exited foster care in fiscal year 2012 (U.S. Department of Health and Human Services, 2013). Up to 25% of children placed in foster care experience 3 or more changes in foster homes, and these placement changes are often accompanied by changes in physicians (Committee on Early Childhood, Adoption, and Dependent Care, 2002). Coordination and transfer of care are crucial to avoid missed and improper management of chronic conditions as well as early detection of new conditions. 3.5.2. Guidelines The AAP recommends reassessments at times of significant changes in placement such as changes in foster home placements as well as approaching reunification (Committee on Early Childhood, Adoption, and Dependent Care, 2002). To enhance continuity of care, an abbreviated health record, often called a medical passport, is suggested to ensure the transfer of essential health information (Committee on Early Childhood, Adoption, and Dependent Care, 2002). The COA recommends planning for foster care changes and exit; it endorses reassessment of needs and the development of an aftercare plan sufficiently in advance of case closing such that the child need not experience lapses or deficiencies in their care; this plan should specify services needed or desired, and the steps for obtaining these services (Council on Accreditation. Family Foster Care and Kinship Care (PA-FKC) standard, 2013). Prior to discharge from foster care, the child should receive assistance to maintain or obtain health insurance, health records, medical, dental, developmental, mental health, and substance use treatment services as needed (Council on Accreditation. Family Foster Care and Kinship Care (PA-FKC) standard, 2013). Youths aging out of foster care are especially vulnerable to information transfer problems because they may not have the skills to navigate the adult healthcare system on their own. Guidance is needed to aid the adolescent in understanding their health issues and link them with new adult primary care physician as well as behavioral and reproductive health services (Council on Foster Care Adoption and Kinship Care & Committee on Early Childhood, 2012). The AACAP in conjunction with the CWLA recommends that children that are about to leave the system, whether moving to self-sufficiency or returning home, should be reassessed (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). Those who need or desire further services for mental health issues or for their use of alcohol and other drugs should have adequate referral and follow-up plans in place to assure continuity of care (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). All parties involved in the child's care should
be notified of any follow-up appointments (American Academy of Child and Adolescent Psychiatry, Child Welfare League of America, 2003). It is important to note that sometimes placement changes occur with very short notice so it can be difficult to ensure that all parties are notified with an adequate amount of time. Despite the potential for short notice, these organizations have provided guidelines that account for continuous reassessment to update any changes in a child's health status prior to changes or exit from foster care. 3.5.3. Gaps in current practice One study indicates that as the number of placement changes increases, so does the rate of ED visits with about 75% of these visits occurring during the time period immediately after placement change (Rubin et al., 2004). Another study among children in foster care revealed a decrease in continuity of care compared to non-foster care children (DiGiuseppe & Christakis, 2003). Results from The National Survey of Children's Health indicate that among those who needed care coordination, 31% of foster children did not receive effective coordination, although foster children with special healthcare needs were more likely than foster children without special healthcare needs to receive care coordination (Toomey et al., 2013). Coordination of services is especially challenging for youth aging out of foster care as they are assumed to take responsibility for their own care yet lack the comprehensive healthcare coverage to do so in many situations (Council on Foster Care Adoption and Kinship Care & Committee on Early Childhood, 2012). Although foster youths have higher rates of chronic and behavioral conditions, only about half of youth that age out of foster care receive health coverage (Council on Foster Care Adoption and Kinship Care & Committee on Early Childhood, 2012). It is unclear to what role the Patient Protection and Affordable Care Act will play in improving this situation. 4. Discussion Children in foster care are an especially vulnerable population with complex health conditions, and although professional guidelines detail the actions needed to ensure their well-being, these guidelines are often not followed. From the moment a child enters foster care, through changes in foster home and eventual exit from foster care, the evidence suggests high variability and low adherence to recommended services. Many children do not receive the comprehensive assessment at entry into foster care, routine visits to the physician while in foster care, nor the appropriate care coordination as they change homes or exit from foster care. This is concerning due to the high rates of chronic conditions among these children that need continuous assessment and who will oftentimes lack medical insurance as they age out of foster care, but the lack of quality measures slows improvement in care. Our framework uses a temporal approach to categorize the services within domains of wellness and trauma-specific needs for children and youth in foster care. This framework is based on healthcare guidelines and can be used to identify potential measures to enable the monitoring and improvement in care for these children. Identification of measures can vary depending on the data source used. Potential sources of information regarding the foster care population include child welfare and Medicaid administrative databases, paper and electronic health records, hospital medical and survey data. Each data source provides its own strengths and limitations. Administrative data is a large, low cost source of information whose data can be extracted with relative ease but may not provide a complete assessment of the individual child's care. Medicaid administrative data are useful for tracking healthcare services, however extensive information on custodial arrangements and potential medical and emotional concerns related to the need for state custody are found only in administrative systems of the Child Welfare System. It is unclear whether information on healthcare services in child welfare systems is accurate and detailed and how this varies by county or state. Electronic medical
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record data has the potential to provide clinically robust information on healthcare needs and services, but is costly to extract and may lack key information that occurs outside of a single setting. These data sources are presented primarily from the viewpoint of medical providers and caseworkers in stark contrast with survey data. Surveys completed by youth, foster family caregivers or case managers may provide an alternative medical history as opposed to somewhat disjointed information found in medical records. Still, surveys can be expensive and timeconsuming and are largely dependent on the health literacy and retention of information by the respondent. In all likelihood, the use of multiple data sources merged at the level of the individual child, and studied across states or possibly foster care specific health plans, will provide the most informative evidence on the quality of healthcare in this unique population. This may be possible with the coordinated efforts of local healthcare institutions, local child welfare agencies, and state Medicaid programs. Records could be linked across these different data sources based on direct identifiers such as social security numbers or indirect identifiers such as date of birth, gender, and zip code, in order to make use of the combination of medical and administrative data that is needed to calculate these measures. Existing measures and the Children's Health Insurance Program Reauthorization Act of 2009 quality measures in the general Medicaid/ Children's Health Insurance Program population have set the stage for identifying quality measures specifically for foster children; however, new measures that address special needs of foster children and take into account entry and exit patterns with their varying eligibility will have to be considered. These new measures can ensure that agencies tasked with the care of foster youth have standard indicators for which they can gauge the quality of their services. This framework will hopefully help agencies to consider the variety of data sources at their fingertips and how each can be best utilized to supply information on foster care status, and improve upon current data at different times of care or within each domain. 5. Conclusion Children in foster care are an especially vulnerable population whose complex care requires greater planning, coordination and oversight than the care of the general pediatric population; however, there is currently no uniform way to do this. A set of nationally standardized measures are needed to inform child welfare agencies and policy makers about the gaps in care that need to be addressed to improve the quality and outcomes of care for this population. This manuscript offers a framework for guiding the development of a comprehensive set of quality measures for foster care children. The development and subsequent implementation of such a measure set will require leadership from foster care advocates, providers and policymakers as well as investment in methods for linking data that allow for sufficient and timely data sharing for the purposes of patient care and quality measurement and improvement while still protecting children's rights. A robust set of quality indicators that can guide child welfare agencies, policy makers, and healthcare practitioners is essential to improving the overall well-being of children under the care of child welfare services. Funding This project was supported by grant number U18HS020503 (PI: Scholle) from the Agency for Healthcare Research and Quality (AHRQ). The content is the responsibility of the authors and does not necessarily represent the official views of AHRQ. AHRQ had no involvement in the study design, collection, analysis and interpretation of data. Conflict of interest The authors declare no conflicts of interest.
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