POLICY STATEMENT

Patient- and Family-Centered Care Coordination:A Framework for Integrating Care for Children andYouth Across Multiple Systems

abstractUnderstanding a care coordination framework, its functions, and itseffects on children and families is critical for patients and familiesthemselves, as well as for pediatricians, pediatric medical subspecialists/surgical specialists, and anyone providing services to children andfamilies. Care coordination is an essential element of a transformedAmerican health care delivery system that emphasizes optimal qual-ity and cost outcomes, addresses family-centered care, and calls forpartnership across various settings and communities. High-quality,cost-effective health care requires that the delivery system includeelements for the provision of services supporting the coordinationof care across settings and professionals. This requirement of sup-porting coordination of care is generally true for health systems pro-viding care for all children and youth but especially for those withspecial health care needs. At the foundation of an efficient and effec-tive system of care delivery is the patient-/family-centered medicalhome. From its inception, the medical home has had care coordina-tion as a core element. In general, optimal outcomes for children andyouth, especially those with special health care needs, require inter-facing among multiple care systems and individuals, including thefollowing: medical, social, and behavioral professionals; the educa-tional system; payers; medical equipment providers; home care agen-cies; advocacy groups; needed supportive therapies/services; andfamilies. Coordination of care across settings permits an integrationof services that is centered on the comprehensive needs of the pa-tient and family, leading to decreased health care costs, reduction infragmented care, and improvement in the patient/family experience ofcare. Pediatrics 2014;133:e1451–e1460

The medical home is the standard of care for all children and adults.1–3

The patient-/family-centered medical home (PFCMH) is well positionedto provide coordinated, compassionate, family-centered health careby forming strong links among the primary care provider team,specialist team, nurses, social workers, educators, hospitals, andother health care facilities where patients access services with theirfamily/caregivers and community providers.4

COUNCIL ON CHILDREN WITH DISABILITIES and MEDICALHOME IMPLEMENTATION PROJECT ADVISORY COMMITTEE

KEY WORDScare coordination, family-centered care, patient-centered care,medical home, patient-/family-centered medical home, PFCMH

ABBREVIATIONSACO—accountable care organizationCPT—Current Procedural TerminologyED—emergency departmentEHR—electronic health recordPFCMH—patient-/family-centered medical home

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors. All authorshave filed conflict of interest statements with the AmericanAcademy of Pediatrics. Any conflicts have been resolved througha process approved by the Board of Directors. The AmericanAcademy of Pediatrics has neither solicited nor accepted anycommercial involvement in the development of the content ofthis publication.

The guidance in this statement does not indicate an exclusivecourse of treatment or serve as a standard of medical care.Variations, taking into account individual circumstances, may beappropriate.

All policy statements from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

www.pediatrics.org/cgi/doi/10.1542/peds.2014-0318

doi:10.1542/peds.2014-0318

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2014 by the American Academy of Pediatrics

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Organizational Principles to Guide and Define the ChildHealth Care System and/or Improve the Health of all Children

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Care coordination is a “cross-cuttingsystem intervention”5 that is “the de-liberate organization of patient careactivities between ≥2 participants(including the patient) involved ina patient’s care to facilitate the ap-propriate delivery of health careservices. Organizing care involves themarshalling of personnel and otherresources needed to carry out all re-quired patient care activities, and isoften managed by the exchange ofinformation among participants re-sponsible for different aspects ofcare.”6 Within the context of a high-performing medical home model fo-cused on addressing family-centeredneeds, care coordination is para-mount in developing and fosteringpartnerships across various settingsand communities.7

Successful care coordination takesinto consideration the continuum ofhealth, education, early child care,early intervention, nutrition, mental/behavioral/emotional health, commu-nity partnerships, and social services(as well as payments for these ser-vices) needed to improve the quality ofcare for all children and youth in-cluding those with special health careneeds, while acknowledging the im-portance of language and culture inachieving desired outcomes.8 It is tobe distinguished from disease or casemanagement, which primarily focuseson patients’ medical issues. Casemanagers work with and guide ser-vices intrinsic to their specific agency,often within the constraints of eligi-bility criteria. In contrast, care coor-dinators work with and guide theteam process, which includes and isdriven by the needs of patients andfamilies for services across the com-munity.9 These functions include careplanning and building collaboration/partnerships with all medical andnonmedical providers working witha patient/family.10 Rather than focus-

ing on titles (eg, patient navigator,care coordinator, case manager), it iscritical to focus on competencies, jobdescriptions, and functions in thephysician-led team caring for the pa-tient and his or her family in andoutside the PFCMH.11

NEW INFORMATION AND POLICYDEVELOPMENTS

The American health care system isbeing challenged to reduce costs ofcare while improving quality out-comes. A key component of recentlegislative and regulatory efforts toachieve these savings includes theredesign of systems of care, buildingon robust medical and health carehomes for both children and adults.12

One method of achieving these finan-cial outcomes is the reduction in carefragmentation and inefficiency withinand across health systems. Fragmen-tation of care can be addressed withcare coordination: “a patient andfamily centered, assessment driven,team based activity designed to meetthe needs of children and youth whileenhancing the caregiving capabilitiesof families.”13 Care coordination hasbeen characterized as the set of ac-tivities that occurs in the space be-tween providers, visits, and entities.14

Ultimately, coordination of care ena-bles the achievement of the “tripleaim” (better care, better health, andlower cost), a principal outcome forhealth system transformation.15

Although adult and pediatric healthcare organizations underscore com-mon elements of the medical home(which includes care coordinationacross systems), there are intrinsicdifferences in their respective sys-tems.16 The “Five Ds” that distinguishpediatric from adult medical homemodels are as follows: developmentaltrajectory, dependency on adults, dif-ferential epidemiology of chronic dis-ease, demographic patterns of poverty

and diversity, and overall dollarsspent on children versus adults.17

Another key differentiation is the in-clusion and importance of family in-put in all aspects of coordinatedpediatric care. A recent Institute ofMedicine report provides 10 key rec-ommendations for high-quality healthcare, including 1 emphasizing the in-tegral role of the family: “involvepatients and families in decisions re-garding health and health care, tai-lored to fit their preferences.”18 Thus,it is essential that “family” is includedin the “patient”-centered care model.19

As such, we refer to this model as the“patient-/family-centered medical home”(PFCMH).

Payment for care coordination serviceshas had limited success over the pastdecade. The American Medical Associa-tion added codes 99487–99489 to itsCurrent Procedural Terminology (CPT)manual for care coordination forpatients with complicated, ongoinghealth issues within a medical home,accountable care organization, or simi-lar model.20 The inception of thesecodes allows physicians to documentand bill for coordinating care betweencommunity service agencies, linkingpatients to resources, supporting thetransition of patients from inpatient toother settings, and working to limit so-called preventable readmissions.21

Pediatricians need to advocate for rec-ognition of the codes via third-partypayers in their respective regions.

The multidisciplinary framework out-lined in Fig 1 offers a definition of carecoordination and articulates its es-sential activities and competencies.Pediatric care coordination highlightsthe role of the patient- and family-centered care and team-based activi-ties designed to meet the needs ofchildren and youth. Care coordinationaddresses interrelated medical, den-tal, social, developmental, mentalhealth, educational, and financial needs

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to achieve optimal health and well-ness outcomes.13

BENEFITS OF AND EVIDENCE FORCARE COORDINATION

Simply put, care coordination improvesoutcomes (eg, health care utilization,family functioning/satisfaction, and fi-nances). In a 2009–2010 National Sur-vey of Children with Special HealthCare Needs, 43% of parents reportedreceiving care coordination, as op-posed to 47% in the 2005–2006 itera-tion of the survey.22 These data, whichsuggest a decrease in receipt of carecoordination services over time, war-rant further examination. Data analy-ses from the 2005–2006 National

Survey of Children with Special HealthCare Needs revealed positive associa-tions between care coordination,family-provider relations, and family/child outcomes. Specifically, the pro-vision of care coordination was posi-tively associated with patient- andfamily-reported “receipt of family-centered care,” resulting in “partner-ships with professionals, satisfactionwith services, ease of getting referrals,lower out of pocket expenses andfamily financial burden, fewer hoursper week spent coordinating care, lessimpact on parental employment, andfewer school absences and ED visits.”23

An Illinois study showed that children,youth, and their families had a higher

need for care coordination whencommunication between health careproviders was inadequate.24 Care co-ordination within primary care pedi-atric practices is associated withdecreased unnecessary office andemergency department (ED) visits,enhanced family satisfaction, and re-duced unplanned hospitalizations andED visits.25–27 According to research inNew Orleans, families of children andyouth with special health care needsin an underserved population experi-enced enhanced services from nursecare coordinator support.28 In short,fewer unmet needs for services ensuewhen primary care clinicians aresensitive to the culture and needs ofchildren and youth with special healthcare needs and their families and in-corporate levels of care coordinationin care delivery.29 Care coordinationconducted as a standard of pediatricpractice resulted in increased familysatisfaction with the quality of careand also decreased barriers to care.30

Other data have suggested that thePFCMH represents a process of carethat may help families manage thedaily demands of caring for childrenwith special health care needs throughfamily-centered care, provider-to-providercommunication, and provision of carecoordination.31 A 2011 study in chil-dren and youth with special healthcare needs and their families whoreceived care coordination and in-dividualized care plans via a Medicaidmanaged care plan study reportedimproved satisfaction with mentalhealth services and specialized ther-apies and participants were observedto have a decline in unmet needs,improved satisfaction with specialtycare, and improved ratings of childhealth and family functioning.32

In a busy medical practice, care co-ordination fosters improved pro-ductivity and efficiency by transferringthe mechanics of follow-up care,

FIGURE 1A framework for high-performing pediatric care coordination. (Reproduced with permission fromAntonelli R, McAllister J, Popp J. Developing Care Coordination as a Critical Component of a HighPerformance Pediatric Health Care System: Forging a Multidisciplinary Framework for PediatricCare Coordination. Washington, DC: The Commonwealth Fund; 2009.) CC, care coordination.

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referrals, equipment acquisition, let-ters of medical necessity, patient in-formation, transition of care, andprevious authorization to care coor-dinators rather than physicians. Assuch, efficiency ensues becausephysicians can spend less time onnonclinical issues for patients.

IMPLEMENTING CARECOORDINATION IN TRANSFORMEDSYSTEMS OF CARE

Quality improvement processes areessential in the transformation tohealth care delivery models that sup-port care coordination. However, it iscritical to recognize that broadimplementation of care coordinationrequires consideration of financingmodels, workforce development, andthe development and implementationof tools supporting the provision ofcare coordination.33 The costs of carecoordination are not directly re-imbursable under many traditionalpayment models, such as fee-for-service, despite evidence of reduc-tions in health care costs.29,34,35 Themost recent CPT manual includescodes for care coordination andtransition services.20

Health information technology can playa pivotal role in care coordination.Electronic tools can facilitate in-formation sharing among patients/families and their health care teams,and subsequently, health care teams,community partners, and medical andnonmedical providers. For example,previsit summaries, comprehensivehealth care plans, medical summaries,and personal health records can beshared with, among, and betweenpartners and health care teams caringfor patients.9

Tracking and monitoring patients viathe use of patient registries can sup-port care coordination activities andfunctions and improve patient safety.7

These registries can be incorporated

and supported via electronic healthrecords (EHRs) and other softwaretools with some adaptation. Thistechnology is still evolving with“meaningful use” criteria of EHRs.Meaningful use is intended to usecertified EHR technology to improvequality, safety, efficiency, and ac-countability; reduce health disparities;engage patients and families as part-ners; improve care coordination andpopulation and public health; andmaintain privacy and security of pa-tient health information.36 Ultimately,it is hoped that meaningful use com-pliance will result in better clinicaloutcomes, improved population healthoutcomes, increased transparencyand efficiency, empowered patients/families, and more robust researchdata on health systems.36 Interop-erability of registry functionality andcare plans with team members out-side of the medical arena, but still inthe medical and community “neigh-borhood” caring for a child, is critical.

Care planning includes the use of an“actionable” care plan with assignedtasks/roles, a care plan document, anemergency information form, and/ora medical summary, including pastmedical history and salient specialistinformation.7 These care plans aredeveloped and implemented with in-put from members of the team caringfor a child, including communitypartners, educational specialists, pri-mary care providers, dental pro-viders, medical subspecialists andsurgical specialists, and, most im-portantly, the family and patientthemselves. Coordinated care plansare used across the continuum ofcare by including medical, educa-tional, mental health, community, andhome care provider input.37 Theseplans should explicitly state goals withtherapeutic (including early interven-tion) educational/vocational and fam-ily interventions to maximize outcomes

for children and youth with specialhealth care needs and to drive suc-cessful transitions to adult systems ofcare. It is essential that care plans aremaintained and updated with timelyand salient information from allpartners to avoid duplication of ser-vices and to optimize care for patients.

Health care teams are essential to theprovision of coordinated care. Teamsinclude, but are not limited to, thepatient/family, primary care providers,community partners/agencies, mentalhealth care providers, educationalsystems, medical subspecialists andsurgical specialists, urgent care/EDcenters, nurse practitioners, physi-cian assistants, dietitians, child carecenters, nursing staff, social workers,therapists, home visitors, and othermedical staff. Team building startswith establishing teams of physiciansand ancillary staff and working withpatients, families, and communities tocoach patients/families to optimizetheir health care and chronic conditionmanagement.38

“Relational coordination” is an emerg-ing topic highlighting the fact thatcoordination is not merely manage-ment of the interdependence betweentasks but addresses management ofthe people who are performing tasks.It is defined as “a mutually reinforcingprocess of interaction between com-munication and relationships carriedout for the purpose of task integra-tion.”39 This concept is particularlyrelevant to care coordination forchildren and youth, because care co-ordination “activities” are as impor-tant as the team (eg, families, communitypartners, physicians, nurses, mentalhealth providers, social workers) per-forming those activities. Relationalcoordination values the quality of com-munication (eg, care plans and meet-ings) and the quality of relationshipsbetween families, patients, providers,and partners.

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Internet-based tools can optimizecommunication between families andproviders, provide information, sup-port skills training, allow networkingamong families, facilitate connectionsbetween health care providers andcommunity partners, and elicit patientfeedback about care. Comanagementwith specialists ensures high qualityof care and fosters communicationacross disciplines for patients withmultiple diagnoses.40 Also, care coor-dination augments reciprocity of pa-tient information with transfer acrosssettings (eg, from inpatient to out-patient settings). As health care sys-tem redesign evolves, it is critical thatpractitioners are cognizant of toolsand organizations providing resour-ces for care coordination. Severalnational organizations incorporatestandards on care coordination struc-ture, process, and outcomes. Table 1shows a variety of such organizationsand tools.

Given this rapidly changing and in-novative landscape, it is imperative tocontinue education on care coordi-nation, the PFCMH, accountable careorganizations (ACOs), and family-centered and -driven health care forpracticing physicians, medical stu-dents, resident trainees, nurses, nursepractitioners, physician assistants,mental/behavioral health practitioners,and social workers. This workforcetraining goal can be accomplishedthrough maintenance of certification,continuing medical education, con-tinuing education units, and curricula/competency changes in training. Edu-cation of the workforce is criticallyimportant, because care coordinationfunctions and family-centered princi-ples must be learned and cultivated.The training of current and futurephysicians on the value and pragmaticadoption and implementation of carecoordination is paramount in ensuring itssuccess in practice. The Accreditation

Council for Graduate Medical Educa-tion has selected a care coordinationmilestone as a key competency in thesemiannual assessment of residentsin its “Next Accreditation System,”41

which shows a fundamental commit-ment to training the next generationof physicians in care coordination. Inaddition, a Care Coordination Curric-ulum (funded by the US Maternal andChild Health Bureau) is now availableto support the education of care co-ordination providers. This care co-ordination curriculum is designed tohelp fill the void of inadequate train-ing opportunities for care coordina-tors presently. The target audience forthis curriculum includes families andpatients as well as physicians, nurses,social workers, and administrativestaff. Essentially, it provides a frame-work for the evolution of team-basedpatient- and family-centered care co-ordination. It is currently being usedin several state programs and de-livery systems working to create carecoordination capacity.42

CARE COORDINATION ANDACCOUNTABLE CARE

ACOs are expected to play a key role inachieving the outcomes of the “tripleaim.”15 The Medicare Payment Advi-sory Commission has defined ACOs as“a set of providers associated witha defined population of patients, ac-countable for the quality and cost ofcare delivered to that population.”43

ACO providers could include a hospi-tal, a group of primary care providers,specialists, and possibly other healthprofessionals who share responsi-bility for the delivery of the highestquality care at the lowest appropriatecost. Key elements of accountable careinclude payment reform, performancemeasurement and accountability, andcoordinated continuum of care. In theACO model, there are incentives tomanage health care utilization and

improve quality with shared savingsto control cost. The PFCMH model canbe enhanced through the ACO modelwith greater organization, coordina-tion, and integration throughout thecare system; yet, defining account-ability within and across systems willbe a formidable challenge.44 One mustbegin with the premise that, from theperspective of the patient and family,care integration means that seamlessand coordinated health care servicesare delivered across the entire carecontinuum, irrespective of institu-tional and departmental boundaries.45

Implementing the activities of carecoordination, with explicitly articu-lated roles and responsibilities for allmembers of the care team, will befoundational to the success of ACOs.The recommendations of a nationalexpert panel tasked with defining thecore elements of accountable care forchildren are presented in Table 2.These elements emphasize the uniqueneeds of children and the role of carecoordination in their health care de-livery system.

IMPLEMENTATION

Pediatricians are encouraged to pro-vide and partner with the PFCMH teamin the office setting to manage patientsand work with families and communitypartners across systems.35 The CareCoordination Measures Atlas, de-veloped by the Agency for HealthcareResearch and Quality, provides a listof activities proposed as a means ofachieving coordinated care that areorganized by domains and per-spectives (patient/family, health careprofessional, system representative)and can be a useful tool in achievingthese aims.46 There are several or-ganizations that promote medicalhome and care coordination resour-ces and tools. Table 1 summarizes sev-eral organizations, Web sites, and toolsavailable to support those providing

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TABLE 1 Care Coordination Tools and Organizations Supporting Care Coordination

Tool/Organization Developer(s) Description Link(s)

Patient-Centered Medical Home(PCMH) Recognition Program

The National Committeefor Quality Assurance (NCQA)(with input from the 4 primarycare specialties)

“Gives practices information aboutorganizing care around patients,working in teams and coordinatingand tracking care over time”; specificelements covered including “Trackingand coordinating care” in the patient-centered medical home

http://www.ncqa.org/Programs/Recognition/PatientCenteredMedicalHomePCMH.aspx

http://www.ncqa.org/Portals/0/Programs/Recognition/PCMH%202011%20Scoring%20Summary.pdf

Medical Home SystemSurvey (MHSS)

National Quality Forum (NQF) Focuses on improved patient care andaddresses communication, transitions,health care home/PFCMH proactiveplan of care and follow-up, andinformation systems

Requires log-in

The Patient-Centered Primary CareCollaborative (PCPCC)

Multistakeholder coalition ofemployers, consumer groups,health care providers

Invested in the advancement of carecoordination theory and practice andPFCMH as described in recent publications

http://www.pcpcc.org/; http://www.pcpcc.net/video/care-coordination-and-patients-role-shared-decision-making-and-team-communication

National Center for Medical HomeImplementation (NCMHI)

American Academy ofPediatrics (AAP)

Provides tools and resources for carecoordination with specific supports,templates, and guides for pediatricians.

http://www.medicalhomeinfo.org/;http://www.aap.org/en-us/professional-resources/practice-support/Pages/Care-Coordination-Resources.aspx; http://www.medicalhomeinfo.org/how/care_delivery/

TransforMED American Academy of FamilyPhysicians (AAFP)

Adult and pediatric medical home;TransforMED provides ongoingconsultation, support, tools, and resourcesto physicians and practice leaders lookingto transform their practices to a newmodel of care based on the conceptof the PFCMH

http://www.transformed.com/resources/Continuity_of_Care.cfm

Medical Home Builder American College ofPhysicians (ACP)

Adult medical home. Medical Home Builderis divided into self-paced modules ona variety of operational and clinicalareas. Each of the modules containsbackground information, the ACPPractice Biopsy (a practice assessmenttool), and links to the Resource Library,which includes relevant references andinformative guides in a variety of formatsincluding downloadable guides andpolicy templates.

https://www.practiceadvisor.org/home

Care Coordination AccountabilityMeasures for PrimaryCare Practice

Agency for Healthcare Researchand Quality (AHRQ)

This report presents selected measuresfrom the Care Coordination MeasuresAtlas that are well suited for primarycare practice. The selected measuresare divided into 2 sets: Care CoordinationAccountability Measures (from thepatient/family perspective) andCompanion Measures (from the healthcare professional and systemperspectives; ie, self-assessment).

http://www.ahrq.gov/qual/pcpaccountability/pcpaccountability.pdf

Other National Medical Homerecognition/accreditationprograms

Provided by National Center forMedical HomeImplementation (NCMHI)

Provides a list of additional programsoffering medical home recognition,accreditation, and standards for interestedpractices and organizations

http://www.medicalhomeinfo.org/national/recognition_programs.aspx

Care Coordination Curriculum42 Boston Children’s MedicalCenter; Maternal andChild Health Bureau

This curriculum, funded by the US MaternalChild Health Bureau can be used intraining programs at the levels oflocal, state, national, delivery systems,and pediatric practices.

www.bostonchildrens.org/CareCoordinationCurriculum

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services to children and families. Ashealth care reform implementationcontinues with delivery system changesand ACO evolution, pediatricians canwork via their state’s American Acad-emy of Pediatrics’ chapters, with chil-dren’s cabinets in respective states/commonwealths, and with other inter-/intraagency state coordinating bodiesto ensure that system changes sup-port improved care coordination op-portunities for meeting the needs ofchildren and youth. Care coordinationactivities for implementation includethe following:

� establishing formal responsibili-ties among team members andwith the patient and family to com-prehensively address patientneeds;

� fostering strength-based relation-ships with families and childrenwhile building on existing strengthsof patients and their family sup-port systems;

� collaborating with all team mem-bers and providers involved in car-ing for a patient and family,including (but not limited to) med-ical subspecialists and surgicalspecialists, nurse practitioners,nurses, mental health care pro-viders, social workers, dietitians,educators, community partners,child care centers, home visitors,and family networks;

� communicating across all systems(medical and nonmedical) involvedin a child’s care while adhering toHealth Insurance Portability andAccountability Act rules and FamilyEducational Rights and Privacy Actregulations and consent driven byfamilies and patients;

� facilitating transitions between en-tities (eg, pediatric/adult providers,community partners, hospitals,urgent/emergency care facilities,offices, specialists) and acrosstime;

� assessing needs and establishingclear goals for the patient, family,health care team, and system;

� creating, implementing, and updat-ing a formal written plan of carewith family/patient input that issensitive to their language, values,and culture; examples can befound at the National Center forMedical Home ImplementationWeb site (http://www.medicalho-meinfo.org/how/care_delivery/#care);

� monitoring, following, and respond-ing to needs and changes overtime;

� supporting self-management goalsas outlined by the team and pa-tient/family;

� linking and collaborating withcommunity resources and part-ners, including state Title V Chil-dren and Youth with SpecialHealth Care Needs programs (eg,formal meetings, education collab-orations, task forces, policy devel-opment meetings);

� fostering knowledge about com-munity resources and linkingfamilies/patients to those resour-ces commensurate with the needsof the patient, family, and popula-tion;

� using quality improvement strate-gies to facilitate implementationfor the medical home team, staff,and partners (eg, EQIPP medicalhome course, APEX-AAP digital nav-igator) (see Table 1);

� visiting the National Center forMedical Home Implementation Website (www.medicalhomeinfo.org)

TABLE 1 Continued

Tool/Organization Developer(s) Description Link(s)

AAP Practice Excellence(APEX) Program

American Academy of Pediatrics Guides physician practices throughpractice transformation into thePFCMH model of care. The APEXprogram is intended to provideknowledge, resources, and toolsnecessary to address practicetransformation both efficientlyand effectively.

http://www.aap.org/en-us/professional-resources/practice-support/APEX/Pages/The-Program.aspx

TABLE 2 Summary of Core Principles forCreating Accountable Child HealthOutcomes

1. Child health care delivery has the potential todeliver both short- and long-term cost savings.

2. The epidemiology and treatment of chronicconditions in children are different than theyare in adults.

3. Families are the drivers of child health.4. Implementation of life-course approaches isessential for optimal child, adult, andpopulation health outcomes.

5. Children’s health care requires a diverse andcomplex network of nonmedical and medicalstakeholders.

6. There is a strong need for well-defined carecoordination and integration in children’shealth care.

7. Children represent a disproportionate segmentof the population living in poverty, with largedisparities among different subgroups.

8. Child health care quality measures requirefurther development and specialized methods.

9. Payment for child health must incentivizestakeholders to provide elements ofaccountable care.

Source: unpublished data from SA Londhe, MHA, MA;N Sachedina, MBBS, MBA, MPP; M Mann, MD, MPH;S Wegner, JD, MD; RC Antonelli, MD, MS; March 12, 2012.

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for assistance and examples ofsupport, resources, and templatesin transforming clinical practiceinto a PFCMH;

� using health information technol-ogy and tools to facilitate care co-ordination7–9,40;

� advocating for adequate pay-ment mechanisms for supportingcare coordination (using CPTcodes)20,21,26;

� ensuring ACOs and integrated de-livery systems address and pro-mote the integrity of the carecoordination model (see Table 2)44–46;

� engaging with national organiza-tions dedicated to quality measure-ment to ensure care coordinationmetrics and standards are appro-priate to advance child health out-comes47; and

� supporting efforts to develop prac-tical implementation of care coor-dination algorithms in practice,practice management, and teamdevelopment.

SUMMARY AND CONCLUSIONS

Care coordination should be a team-and family-driven process thatimproves family and health carepractitioner satisfaction, facilitateschildren’s and youth’s access to ser-vices, improves health care outcomes,and reduces costs associated withhealth care fragmentation, which canlead to under- and overutilization ofcare. It is imperative that well-definedcare coordination is integrated intochildren’s health care. Tools for carecoordination include health informa-tion technology, integrated health careteams, and Internet-based resources.Because of their foundational relianceon PFCMH, ACOs may support the de-livery of high-quality, lower-cost carebut only if explicit elements of carecoordination are included in delivery

system design and training andresources are provided for care co-ordination.

RECOMMENDATIONS

1. Use and create mechanisms forpatients/families to learn theskills they may need to be part-ners in their own care and indecision-making for optimal carecoordination.48

2. Ensure that the patient’s and fam-ily’s needs for services and infor-mation sharing (eg, care planning)across people, systems, and func-tions are met via (a) formal as-sessments, (b) infrastructure (eg,teams), and (c) tracking (eg, reg-istries); this is crucial in opera-tionalizing care coordination.46

3. Continually involve the patient/family (eg, families as partners/advisors), build on the strengthsof the patient/family, clearly delin-eate responsibilities of team mem-bers, and create careful handoffswhen transitioning across settings(eg, between inpatient and outpa-tient settings and between pediat-ric and adult care providers orsettings).46,49–51

4. Use and develop efficient andaccredited health information sys-tems and information technologyadvances to foster successfultransfer of information; to sup-port collaborative communica-tions between patients, families,and the care team; and to facili-tate shared decision-making (eg,developing and using care plans).

5. Use care coordination acrosstransitions between entities ofthe health care system (ie, be-tween and among patient careteams, across settings, betweencaregivers, and between healthcare organizations) and with tran-sitions over time (ie, across the

life span, between episodes ofcare, across trajectory of ill-nesses).49–51

6. Ensure that comanagement andcommunication occur among spe-cialists and primary care pro-viders. This care model requiresreciprocal and bidirectional com-munication (ie, secure e-mail,phone call, note, fax), which canbe augmented, but not replaced,with health information technol-ogy.7,37

7. Ensure ongoing education of ele-ments of care coordination andthe medical home for practicingphysicians, nurse practitioners, phy-sician assistants, nurses, medicalstudents, resident trainees (acrossdisciplines), mental/behavioral healthcare practitioners, social workers,and other health care profession-als via specific training/curricula,continuing medical education pro-grams, and publications.41,42

8. Understand the landscape of thePFCMH and care coordination asthey relate to national organiza-tions and certification/standards,such as ACOs, the National Com-mittee for Quality Assurance, thePatient-Centered Primary CareCollaborative, the National QualityForum, quality metrics broadly,and health care reform, includingfinancing of care coordination aswell as remote collaborative ser-vices (eg, phone, e-mail consultswith specialists, phone/e-mail en-counters with families) that max-imize the potential of children,youth, and families.47

9. Collaborate with state Title Vagencies and Maternal ChildHealth Block Grant applications en-suring that care coordination isincorporated and addressed andthat best practices of care coordi-nation models are emulated.

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10. Understand and use new care co-ordination codes (99487–99489)20

and advocate for payment ofthese care coordination servicesby payers.

LEAD AUTHORSRenee M. Turchi, MD, MPH, FAAPRichard C. Antonelli, MD, MS, FAAP

COUNCIL ON CHILDREN WITHDISABILITIES EXECUTIVE COMMITTEE,2013–2014Kenneth W. Norwood Jr, MD, FAAP, ChairpersonRichard C. Adams, MD, FAAPTimothy J. Brei, MD, FAAPRobert T. Burke, MD, MPH, FAAPBeth Ellen Davis, MD, MPH, FAAPSandra L. Friedman, MD, MPH, FAAPAmy J. Houtrow, MD, PhD, MPH, FAAPDennis Z. Kuo, MD, MHS, FAAPSusan E. Levy, MD, MPH, FAAPRenee M. Turchi, MD, MPH, FAAPSusan E. Wiley, MD, FAAPMiriam A. Kalichman, MD, FAAP, Past ExecutiveCommittee MemberNancy A. Murphy, MD, FAAP, Immediate PastChairperson

LIAISONSCarolyn Bridgemohan, MD, FAAP – Section onDevelopmental and Behavioral PediatricsMarie Y. Mann, MD, MPH, FAAP – Maternal andChild Health BureauGeorgina Peacock, MD, MPH, FAAP – Centers forDisease Control and PreventionBonnie Strickland, PhD – Maternal and ChildHealth BureauNora Wells, MSEd – Family VoicesMax Wiznitzer, MD, FAAP – Section on Neurology

STAFFStephanie Mucha, MPH

MEDICAL HOME IMPLEMENTATIONPROJECT ADVISORY COMMITTEE,2013–2014W. Carl Cooley, MD, FAAP, ChairpersonRichard C. Antonelli, MD, MS, FAAPJoan Jeung, MD, FAAPBeverly JohnsonThomas S. Klitzner, MD, PhD, FAAPJennifer L. Lail, MD, FAAPLinda L. Lindeke, PhD, RN, CNPAmy Mullins, MDLee PartridgeWilliam Schwab, MDChristopher Stille, MD, MPH, FAAP

Debra Waldron, MD, MPH, FAAPNora Wells, MSEdCalvin Sia, MD, FAAP, Immediate Past Chair-person

LIAISONSColleen Kraft, MD, FAAP – Council on CommunityPediatricsThomas F. Long, MD, FAAP – Committee on ChildHealth FinancingMarie Y. Mann, MD, MPH, FAAP – Maternal andChild Health BureauBonnie Strickland, PhD – Maternal and ChildHealth Bureau

STAFFMichelle Zajac Esquivel, MPHAngela Tobin, AM, LSW

ACKNOWLEDGMENTThe authors acknowledge the supportof the Health Resources and ServicesAdministration Maternal and ChildHealth Bureau in the inception and de-velopment of the care coordinationcurriculum.

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Care for Children and Youth Across Multiple SystemsPatient- and Family-Centered Care Coordination: A Framework for Integrating

  

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