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Letter to the Editor

Pediatric Care Coordination: Lessons Learned and Future Priorities

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Rhonda G. Cady, PhD, RN
Wendy S. Looman, PhD, APRN, CNP
Linda L. Lindeke, PhD, APRN, CNP, FAAN
Bonnie LaPlante, MHA, RN
Barbara Lundeen, MS, RN, PHN
Amanda Seeley, MSN, APRN, CNP
Mary E. Kautto, MA, BSN, RN

Abstract

A fundamental component of the medical home model is care coordination. In Minnesota, this model informed design and implementation of the state’s health care home (HCH) model, a key element of statewide healthcare reform legislation. Children with medical complexity (CMC) often require care from multiple specialists and community resources. Coordinating this multi-faceted care within the HCH is challenging. This article describes the need for specialized models of care coordination for CMC. Two models of care coordination for CMC were developed to address this challenge. The TeleFamilies Model of Pediatric Care Coordination uses an advanced practice registered nurse care (APRN) coordinator embedded within an established HCH. The PRoSPer Model of Pediatric Care Coordination uses a registered nurse/social worker care coordinator team embedded within a specialty care system. We describe key findings from implementation of these models, and conclude with lessons learned. Replication of the models is encouraged to increase the evidence base for care coordination for the growing population of children with medical complexities.

Citation: Cady, R., Looman, W., Lindeke, L., LaPlante, B., Lundeen, B., Seeley, A., Kautto, M., (September 30, 2015) "Pediatric Care Coordination: Lessons Learned and Future Priorities" OJIN: The Online Journal of Issues in Nursing Vol. 20 No. 3.

DOI: 10.3912/OJIN.Vol20No03Man03

Key Words: Care coordination, children, youth, special needs, medical complexity, advanced practice registered nurse, healthcare home, medical home, primary care, specialty care, continuity, collaboration, youth transition

Children are especially in need of coordinated comprehensive family-centered care... Current healthcare reform efforts are guided by the Institute for Healthcare Improvement (IHI) Triple Aim: improved health, improved experience of care, and reduced cost (IHI, 2015). The evocative title of a recent American Nurses Association (ANA) book, "Care Coordination: The Game Changer: How Nursing is Revolutionizing Quality Care" (Lamb, 2014) recognizes the growing body of convincing evidence that care coordination is an effective IHI Triple Aim strategy. Dr. Lamb states: "Care coordination....is the glue that makes the healthcare system a safe and coherent place" (p. xvi).

Children are especially in need of coordinated comprehensive family-centered care because of their "developmental trajectory, dependency on adults, differential epidemiology of chronic disease, demographic patterns of poverty and diversity, and overall dollars" American Academy of Pediatrics, 2014, p. e1452).

In both models, the nurse is a key driver of care coordination success, in partnership with the care coordination team. Minnesota’s Health Care Home (HCH), known nationally as the medical home, is an important aspect of the state's nation-leading 2008 health reform law, and is driven by the IHI Triple Aim (Minnesota Department of Health [MDH], 2013b; MDH, 2014; IHI, 2015). This article describes two pediatric care coordination models in Minnesota, a state with a long record of innovation and top-of-the nation population health outcomes. The overriding goal of these models is enhancement of care coordination within a child’s medical neighborhood which includes the HCH, using tailored care coordinator roles and functions. In both models, the nurse is a key driver of care coordination success, in partnership with the care coordination team. Underlying the success of these models is the nursing profession’s core standard and competency of patient-centered care coordination (American Nurses Association, 2012).

Health Reform in Minnesota

Motivation to establish a HCH initiative emerged from compelling testimony by Minnesota parents... Interest and momentum for Minnesota’s HCH began in the mid-1990s when the state committed to the family-centered pediatric medical home model, where the care team partners with the child and family to achieve overall health by addressing both medical and non-medical needs (Ad Hoc Task Force on Definition of the Medical Home, 1992; American Academy of Pediatrics, 2014; National Center for Medical Home Implementation, n.d.; Sia, Tonniges, Osterhus, & Taba, 2004). Motivation to establish a HCH initiative emerged from compelling testimony by Minnesota parents, based on their experiences receiving patient-centered coordinated care. Other driving factors were reduced hospital admissions and increased dental and well visits, based on analysis of Minnesota Medicaid claims data. Over the next decade (see Figure 1), a committed group of consumers, primary care providers, legislators and MDH and Department of Human Services (DHS) personnel brought the HCH model to reality with passage of the state’s health reform law in May 2008 (MDH, 2014).

Figure 1. HCH Timeline

[View full size]

A major goal of the HCH design was a transparent, public-private collaboration that utilized multi-stakeholder groups and local and national health reform experts. The Institute for Clinical Systems Improvement (ICSI) helped form HCH performance outcome measures for use in evaluating applicants for HCH certification (Institute for Clinical Systems Improvement, n.d.). An assessment of Minnesota provider and patient readiness for HCH guided capacity building efforts (MDH, 2013a). A community engagement and input process supported by the Robert Wood Johnson Foundation included multi-stakeholder groups and experts who formulated the resulting HCH program (see Figure 1). HCH standards and criteria (MDH, 2009) are based on the Chronic Care Model (Improving Chronic Illness Care , 2015; Wagner, 1998) and other literature/expert advice. The voluntary HCH certification process began in 2010 and is an ongoing quality improvement process that includes achievement of 67 criteria over three years (Minnesota Department of Health, 2013b). The goal of certifying 67% of Minnesota’s primary care clinics serving Minnesotans by the end of 2015 is well underway, with 383 (53%) certified as of June 2015 (MDH, n.d.).

The broad population of children and youth with special health needs is defined as having or being at risk... and utilizing more health and related services than the general population of children. The broad population of children and youth with special health needs is defined as having or being at risk for having chronic physical, developmental, behavioral, or emotional conditions, and utilizing more health and related services than the general population of children (McPherson et al., 1998). The 2009/2010 National Survey of Children with Special Health Care Needs (Data Resource Center for Child and Adolescent Health, 2012) indicates that 15% of U.S. and14.3% of Minnesota children and youth have special health needs and only 42.6 % of their Minnesota families receive effective care coordination.

The Minnesota Department of Health Children and Youth with Special Health Needs Strategic Plan 2013-2018 ([CYSHN], n.d.) guides the development, coordination and improvement of state and local systems of care for CYSHN. A primary objective of the CYSHN Strategic Plan is increased access to coordinated, comprehensive care within a HCH. Comprehensive and coordinated care depends on effective information sharing between multiple systems including primary care, specialty care, schools, public health, home care agencies, social services, and an array of other community resources. A key strategy for achieving this objective is building the capacity of HCHs to work with CYSHN and their families by implementing pilot projects that evaluate how varied models of care coordination link these services in meaningful ways to assure communication is appropriate, efficient and consistent.

Children with Medical Complexity

Within the broad population of CYSHN is a subgroup of children who have multiple chronic conditions; require care from multiple specialists and service providers; and often require life-sustaining technology (Berry, Agarwal, Cohen, & Kuo, 2013; Cohen, Kuo, et al., 2011). This subgroup, children with medical complexity (CMC), composes less than 1% of U.S. and Canadian children (Kuo, Cohen, Agrawal, Berry, & Casey, 2011; Neff, Sharp, Muldoon, Graham, & Myers, 2004), but accounts for disproportionately higher rates of healthcare costs than other children (Berry et al., 2014; Cohen et al., 2012; Newacheck, Inkelas, & Kim, 2004).

When care coordination needs are met, CMC and their families have better outcomes. As “high-need, high cost” patients with multiple complex conditions, CMC represent an important population of individuals engaged with healthcare systems (Hong, Siegel, & Ferris, 2014). CMC receive care from multiple providers in multiple systems, and families living in rural areas often travel long distances to receive this care. The need for and benefit from care coordination by families of CMC is well documented (Cady et al., 2015; Cohen, Bruce-Barrett et al.., 2011; Farmer, Clark, Drewel, Swenson, & Ge, 2011; Looman et al., 2015). When care coordination needs are met, CMC and their families have better outcomes (Berry et al., 2013).

In practice, meeting the care coordination needs of CMC within a HCH is challenging. A fundamental component of effective care coordination is communication across settings yet families report their greatest challenge is disconnect and lack of communication between services and providers (Lutenbacher, Karp, Ajero, Howe, & Williams, 2005). These findings were echoed by primary care providers in a 2014 needs assessment conducted throughout Minnesota (Gillette Children's Specialty Healthcare [GCSH], 2014).

Despite the best intentions of clinicians and the array of available modalities, communication is often fragmented, delayed, or unsuccessful. Despite the best intentions of clinicians and the array of available modalities, communication is often fragmented, delayed, or unsuccessful. Busy providers find themselves playing ‘telephone tag’ and clinic visit notes and discharge summaries sent via the U.S. Postal Service are delayed when provider names or addresses are incorrect. A lack of regional health information exchange limits the potential of health information technology (HIT) in care coordination (Samal, Hasan, Venkatesh, Volk, & Bates, 2015). Given the volume of health information and frequent transitions within and across systems of care by CMC, electronic health record (EHR)-based communication tools hold potential for optimizing care (Louiselle, 2011); yet studies show inconsistent adoption of these tools in practice (Karsh, Weinger, Abbott, & Wears, 2010; Serrato, Retecki, & Schmidt, 2007) and the potential for “information chaos” (Beasley et al., 2011).

Need for Specialized Models of Care Coordination for CMC

Specialized programs for CMC are most likely to be effective when they customize their approach and team composition to patient needs, consider care coordination as a key role, and use technology effectively to support the efforts of the team (Hong et al., 2014). Figure 2 illustrates two models of care coordination for CMC implemented in Minnesota. Both models target CMC who are at risk for gaps in care and communication across settings. The primary differences between the models are care coordination team location, care coordination team composition, the use of technology to support team interactions and implementation timeline.

Figure 2. Specialized Care Coordination Models for CMC

[View full size]

The TeleFamilies model, implemented and evaluated from 2010-2014, was housed in an established HCH for CYSHN that is part of a large, urban, hospital-based primary care clinic. This clinic is part of an integrated health system and uses a common electronic health record (EHR) to facilitate team interactions. TeleFamilies added an advanced practice registered nurse (APRN) care coordinator who used telephone and web-based video encounters to supplement the HCH care coordination process.

The Primary-Specialty (PRoSPer) model, implemented in 2014 and ongoing through 2017, is housed in a large, urban, free-standing specialty health system and relies primarily on telephone, fax, and secure e-mail to facilitate communication among the care coordination team members. PRoSPer added a registered nurse/social worker care coordination team within the specialty system to work in partnership with families and the existing primary care/HCH care coordination team.

TeleFamilies Model of Pediatric Care Coordination

Funded by a research grant from the National Institute of Nursing Research (NINR, NIH, R01NR010883, Stanley M. Finkelstein, Principal Investigator), TeleFamilies was a randomized clinical trial conducted from 2010-2014. From a population of approximately 450 CYSHN enrolled in the HCH, 163 families of children meeting the definition of CMC were recruited to participate in the trial. Families were randomized into either the usual care (control) or one of two intervention groups (Figure 2).

The TeleFamilies model of care coordination tested the effect of increasing nurse dose and adding telehealth technology to an existing HCH for children with medical complexity. The TeleFamilies model of care coordination tested the effect of increasing nurse dose and adding telehealth technology to an existing HCH for children with medical complexity (University of Minnesota, 2014). Nurse dose, according to Brooten and Youngblut (2006), refers to both the amount of care provided by the nurse and the depth and breadth of knowledge, synthesis of data, and intervention complexity (Brooten, Youngblut, Deatrick, Naylor, & York, 2003). The usual care group continued to receive care coordination through the existing HCH model, which included a medical assistant care coordinator (0.5 Full Time Equivalent [FTE]) and triage service provided by registered nurses (1.0 FTE). The intervention groups received the TeleFamilies model of care coordination, which added an APRN care coordinator (1.0 FTE) to increase “nurse dose” available to each family (Looman et al., 2013). The APRN delivered care coordination primarily through telephone or telephone plus video telehealth.

Care teams may customize their approach to the care of CMC by providing a means through which families and providers may rapidly identify and respond to changes in the child’s condition to avoid emergency department visits or hospitalizations (Hong et al., 2014). This APRN care coordinator was a certified pediatric nurse practitioner with specialized competencies in the area of family-centered care for children with special healthcare needs. The APRN was available full time during office hours, via telehealth (telephone and web-based video), to address care coordination needs, and served as a focal point of collaboration with families, both within and across settings.

The expanded scope of practice of the APRN minimized handoffs required during care coordination, resulting in shorter time to resolution and lower risk of gaps or delays in care. The expanded scope of practice of the APRN minimized handoffs required during care coordination, resulting in shorter time to resolution and lower risk of gaps or delays in care. For children experiencing an acute change in health status, the APRN care coordinator helped families determine whether the issue could be resolved through telehealth care, a next-day office visit, or emergency department visit. In the course of a child’s transition from hospital to home care, for example, the APRN could (in collaboration with the primary care provider) prescribe medication refills, monitor a child’s response to a parenteral nutrition change, and write a letter of medical necessity for equipment at the child’s school. For each of these activities, a care coordinator without this advanced level of academic preparation would need instead to send a message to a provider, wait for a response, and follow up with the family and affiliated parties.

To facilitate meaningful use of data in care coordination and to minimize potential for “information chaos” (Beasley et al., 2011), TeleFamilies incorporated the core concepts of data, information, knowledge, and wisdom (DIKW) as described by the ANA. In this model, the nurse integrates objective data with the patient’s subjective experience, and applies knowledge to the processes of diagnosis and treatment through the use of judgment and critical thinking (ANA, 2010). The HCH utilized a custom-built EHR plan of care in the form of a Patient Home Summary. Data that were not auto-populated from structured EHR data, but critical to coordination of the child’s care, were synthesized and integrated by the APRN from EHR and external documents. The TeleFamilies project developed an EHR documentation template to reflect critical elements of care coordination with prompts to facilitate updating the plan of care (Looman et al., 2012). Telehealth care utilizing web-based video enabled the APRN to view the child and family in the context of their home and to engage multiple members of the family and home care providers in a conversation about the child’s care.

Telehealth care utilizing videoconferencing enabled the APRN to view the child and family in the context of their home... Effectiveness of the TeleFamilies model of care coordination (Table 1) focused on answering the primary research question: Does the addition of APRN care coordination within a robust health care home reduce healthcare service utilization and improve child and family outcomes? Analysis of child and family outcome data by Looman et al. (2015) indicated that the model was successful in improving intervention families’ perceptions of their providers, their overall health care experience, and provider communication. Analysis of family outcome data by Cady et al. (2015) indicated the model was successful in increasing the adequacy of care coordination received by families in both intervention groups. Analysis of health care service utilization data continues.

Table 1. TeleFamilies Evaluation Plan

Triple Aim Component

Construct

Evaluation Metric

Data Source

Collection Frequency

Experience of Care

Family Centered Care

CAHPS1 Children with Chronic Conditions item set (5 items)

Mailed survey

Annual (baseline, one year, two years)

Global Rating of Health Care

CAHPS1 Children with Chronic Conditions item set (1 item)

Mailed survey

Annual (baseline, one year, two years)

Global Rating of Primary Provider

CAHPS1 Children with Chronic Conditions item set (1 item)

Mailed survey

Annual (baseline, one year, two years)

Population Health

Care Coordination Adequacy

CAHPS1 Children with Chronic Conditions item set (1 item)

Mailed survey

Annual (baseline, one year, two years)

Quality of Life

PedsQL Core Measure2 &
Family Impact Module3

Mailed survey

Annual (baseline, one year, two years)

Access to Care

CAHPS1 Children with Chronic Conditions item set (4 items)

Mailed survey

Annual (baseline, one year, two years)

Care Coordination Process

Purpose, Mode, Outcome of encounter

Telehealth Nurse Encounter Tool

Each Encounter with Nurse

Per Capita Cost

Health Care Service Utilization (HCSU)

Count of planned, unplanned visits and admissions

HCSU Calendars

Monthly

1CAHPS (Agency for Healthcare Research and Quality, n.d.)
2PedsQL Core Measure (Varni, Burwinkle, Seid, & Skarr, 2003)
3PedsQL Family Impact Module (Varni, Sherman, Burwinkle, Dickinson, & Dixon, 2004)

Exploration of encounter data in the control and intervention groups revealed important differences in processes used by the nurses in these models. Because the triage model is designed as a reactive model, encounters were often task-specific and involved multiple handoffs before resolution. For example, a parent calling to request completion of a form for the child’s school would leave a message with the triage nurse, who would forward the message to the primary care provider. Multiple repeat requests may have been required before the task was completed and communicated to the parent who initiated the contact. In contrast, a parent contacting the APRN for the same task would have the issue resolved in the same day, and the encounter would trigger a care plan review by the APRN. The APRN might also use the encounter with the parent to ensure that communication with the school was intact and that the child was generally doing well at home. This proactive model of care, in contrast with the reactive model of triage care, is a hallmark of the TeleFamilies approach to APRN-delivered care coordination.

Establishing a relationship with families is a prerequisite to engaging in care coordination. Implementation and evaluation of the TeleFamilies model of care coordination revealed four broad lessons learned. Although the APRN care coordinator was a member of the HCH team, establishing a relationship with the HCH primary care providers and collaborating on patient needs before, during, and after clinic visits was essential for care coordination continuity (Cady et al., 2015). Establishing a relationship with families is a prerequisite to engaging in care coordination. A TeleFamilies parent expressed, ‘‘you don’t realize how much help you needed until you get it. There was so much I was managing on my own [before the study]’’ (Looman et al., 2015, p. 361). Access to a single individual who was consistently available and was familiar with the child was important to families, as evidenced by a caregiver stating, “This one person is the same person on each and every call, instead of ER visits/urgent care/primary/specialists etc” (Looman et al., 2015, p. 362). Finally, despite availability of video telehealth to 54 families in the telephone plus video care coordination group, relatively few web-based video encounters were conducted with the APRN. The research protocol was to initiate video when family or APRN felt it would improve communication. Future studies should consider a more formalized and consistent protocol for initiating video encounters.

PRoSPer Model of Pediatric Care Coordination

Funded by a grant from the MDH CYSHN section, PRoSPer is a three-year ongoing project, initiated in the fall of 2014. From the population of children served by four primary care clinics (three rural clinics and one urban clinic serving an immigrant population), forty children (10 from each clinic) meeting inclusion criteria were recruited to participate in this project (Figure 2). Inclusion criteria included a diagnosis of epilepsy, cerebral palsy, brain injury, muscular dystrophy, or spina bifida, and use of three or more Gillette Children's Specialty Healthcare (GCSH) specialists.

Pediatric HCHs caring for children with medical complexity encounter barriers that include time, lack of familiarity in caring for a child’s specific condition, limited reimbursement, and lack of community resources. The PRoSPer model of care coordination is designed to implement and evaluate a primary care-specialty care collaborative model of care coordination for CMC. Despite the increased number of certified HCHs in Minnesota, a need exists to identify and implement care coordination best practices that decrease fragmentation, coordinate care across specialty care sites and community settings, and increase positive outcomes across the lifespan for CMC and their families. Pediatric HCHs caring for children with medical complexity encounter barriers that include time, lack of familiarity in caring for a child’s specific condition, limited reimbursement, and lack of community resources (McClain, Cooley, Keirns, & Smith, 2014). These needs can be acutely felt by families in rural areas where specialty care is sparse and by families with limited English proficiency or newly immigrated.

In the PRoSPer model, a specialty care coordination team partners with a child’s primary care provider and care coordination team to increase communication and collaboration between settings and deliver comprehensive, family-centered care coordination. The specialty care coordination team resides at GCSH (Gillette Children’s Specialty Healthcare, n.d.a). Located in St. Paul, MN, GCSH is an independent, not-for-profit health system that provides specialized health care for persons with child-onset disabilities such as cerebral palsy, spina bifida, muscular dystrophies, epilepsy, and congenital syndromes. GCSH provides specialty care only; it does not provide primary care and is not eligible for HCH certification. In addition to the St. Paul and three metro areas locations, GCSH has outreach clinics in 14 cities throughout Greater MN (Gillette Children’s Specialty Healthcare, n.d.b).

The appointment coordinator is a unique addition to the care coordination team. The specialty care coordination team developed for PRoSPer is new to GCSH and includes a registered nurse (RN) (0.6 FTE), social worker (SW) (0.6 FTE) and appointment coordinator (0.4 FTE). The team is located at the St. Paul location. The RN and SW meet with families during appointments at the St. Paul and metro clinic locations, and travel as needed to outreach clinic locations to connect with community resources and primary care partners. The appointment coordinator is a unique addition to the care coordination team. The role is needed because GCSH has over 300 providers seeing patients in 18 locations and scheduling specialty appointments in a manner that meets family need is a primary goal of this project.

Four primary care clinic partners were selected to represent varying levels of HCH certification, from none to full, robust implementation. Clinic A is a certified, established HCH in a rural location, with a full-time RN in the care coordinator role. The RN works with families of CMC and their primary care providers, during and between clinic visits, to develop comprehensive plans of care and facilitate communication across settings. Clinic B is a certified HCH in a rural location, with a full-time RN in the care coordinator role. The RN helps facilitate the physician-directed plan of care developed during the clinic visit. Clinic C is a newly certified urban HCH with a primary population of Southeast Asian immigrants with limited English proficiency (LEP), and a community health worker (CHW) in the care coordinator role. The CHW serves as a cultural bridge between clinic providers and families and works with families during clinic visits to identify family needs (primarily social) and to develop plans of care to address these needs. Clinic D is a rural primary care clinic that will initiate the HCH certification process in 2016.

The ‘hub’ of care coordination and degree of specialty care coordination provided to a family is dependent on the primary care practice. The ‘hub’ of care coordination and degree of specialty care coordination provided to a family is dependent on the primary care practice. For practices supporting a robust HCH model, the HCH care coordinator, physically located in the primary care clinic, serves as the hub of care coordination. The HCH care coordinator is a family’s primary point of contact, responsible for updating the shared plan of care and supported in this role by the specialty care coordination team. For primary practices unable to support a robust HCH model, the specialty team serves as the care coordination hub, is the family’s primary point of contact, and supports primary care personnel and providers.

Implementation of the PRoSPer model of pediatric care coordination began in the fall of 2014. The specialty care coordination team met with each primary care clinic to discuss model goals and objectives; determine the ‘hub’ of care coordination (primary care or specialty care); identify the primary contact person(s) at each clinic (care coordinator or primary care provider); and identify CMC (approximately 10) from each clinic who met inclusion criteria. Effectiveness of the PRoSPer model of care coordination is evaluated using the IHI Triple Aim construct (Table 2).

Table 2. PRoSPer Evaluation Plan

Triple Aim Component

Construct

Evaluation Metric

Data Source

Collection Frequency

Experience of Care

Family-Centered Care

5 question family-centered care core outcome from CAHPS1

Family: telephone or in-person survey

Twice: before and after model implementation

Population Health

Care Coordination Adequacy

6 questions from CAHPS1 measuring needing and receiving help with care coordination

Family: telephone or in-person survey

Twice: before and after model implementation

8 questions from the Family Measures for Achieving a Shared Plan of Care with CYSHCN2 tool

Family: telephone or in-person survey

Twice: before and after model implementation

15-question Care Transitions Measure - CTM-153

Family: telephone or in-person survey

As needed: after each specialty hospitalization

Family perception of need for and usefulness of care coordination

Interview / Focus Group

Twice: before and after model implementation

Per Capita Cost

Changes in Health Care Service Utilization

Count of Clinic and Emergency Department Visits; Count of Hospitalizations and length of stay

Primary Care and Specialty Care Medical Record

Quarterly, throughout the evaluation period

Date specialty visit summary or specialty hospitalization discharge summary received by primary care

Primary Care and Specialty Care Medical Record

Quarterly, throughout the evaluation period

1CAHPS (Agency for Healthcare Research and Quality, n.d.)
2Family Measures for Achieving a Shared Plan of Care with CYSHCN (McAllister, 2014)
3CTM-15 (Coleman, n.d.)

To ensure consistent communication of a child’s condition and plan care across formal and informal systems, we developed a unified, shared plan of care (POC) framework based on Center for Medical Home Improvement (CMHI, 2015) and McAllister (2014) models. The POC is developed in collaboration with the family, child, primary, and specialty providers and is updated monthly or when there is an acute change in the child’s condition.

Families are instructed to share the plan of care with persons they feel would benefit from this information, such as schools or home health agency personnel. A primary requirement of the unified shared POC is accessibility or availability to persons involved in a child’s care. EHR systems at the primary and specialty care clinics differ and interoperability and data exchange are not yet available. To allow POC accessibility within these constraints, a Word document was selected as the POC platform. The POC is printed and shared with primary care staff and families. Families are instructed to share the plan of care with persons they feel would benefit from this information, such as schools or home health agency personnel. Primary care clinics that already have a POC (clinics A and D) use information from the PRoSPer POC to supplement existing documents. Primary care clinics lacking a POC (clinics B and C) scan the PRoSPer POC into their EHR.

Initial interactions focus on building a relationship and completion of a pediatric care coordination assessment. Establishing relationships with families is critical to success of the PRoSPer model. The RN or SW care coordinator meets families during GCSH clinic appointments. Initial interactions focus on building a relationship and completing a pediatric care coordination assessment (CMHI, 2015; McAllister, 2014). This assessment helps the care coordinator better understand the child’s likes, dislikes, family structure, needs and priorities. Subsequent family interactions focus on developing the unified, shared POC. The specialty care coordination team proactively contacts each family on a monthly basis to ‘check in’ and identify emerging needs. All families receive the specialty care coordination team contact information and, depending on the level of primary care HCH robustness, are instructed to contact the team with questions and clinical or social concerns.

Establishing relationships with primary care partners is also critical to success of the PRoSPer model. A list of upcoming GCSH clinic visits for participating children is sent to primary clinic care coordinators to facilitate follow-up communication. When a child is hospitalized at GSCH, the specialty care coordination team meets with the family and inpatient SW team to ensure continuity and communication with primary care team members during discharge transitions. When requested by primary care, the specialty care coordination team facilitates provider-to-provider education on management of a child’s complex condition.

When requested by primary care, the specialty care coordination team facilitates provider-to-provider education on management of a child’s complex condition. Implementation of the PRoSPer model of care coordination has had challenges. The primary and specialty care coordination teams are geographically dispersed across the state of Minnesota, limiting the number of in-person visits. The use of video is being explored as a way of increasing these important face-to-face discussions. A lack of interoperable health information exchange resulted in a Word document as the POC platform. Robustness of the primary care clinics HCH model determines where the hub of care coordination resides. Where this hub resides in primary care (clinics A and D), primary and specialty care coordinators frequently communicate and collaborate, and families rely on their primary care coordinator as their single contact. Where the hub resides in specialty care (clinics B and C), families begin to rely on their specialty care coordination team as their single contact. Ensuring communication and partnership with primary care in this model is essential but difficult when the primary care contact is a busy provider rather than a specified care coordinator.

Conclusion

A pilot project aimed at improving the transition preparation of youth with spina bifida and their families was recently implemented at GCHC and represents an effective model of co-management. Nurse transition coordinators work closely with youth and families to create an individualized plan of care, and provide resources and referrals to support increased independence, self-management and the changing roles for parents (Table 3). They also initiate a monthly check-in to support youth and families and to identify emerging needs. Future evaluation of this project will help guide the coordination of transition from pediatric providers to adult healthcare systems.

Table 3. Resources for to youth and families in the spina bifida transition care coordination project

Action

Link

Referrals

  • Social Work
  • Providers
  • Scheduling

Patient and Family Education

  • Videos, Links, and information about transition, spina bifida, advocacy

www.Gottransition.org
www.spinabifidaassociation.org
www.sbtween2teen.org/
www.pacer.org
www.familyvoicesofminnesota.org/

Wallet Card

  • Summary of Medical History, Allergies, and medications

www.hopepaige.com/medicalidform/medical-id-card.aspx



...the value of coordinated care is first in patient and family outcomes. The need for and benefit from care coordination by families of CMC is well documented (Cady et al., 2015; Cohen, Bruce-Barrett et al., 2011; Farmer et al., 2011; Looman et al., 2015). With effective care coordination, better outcomes are evident for CMC and their families (Berry et al., 2013). While a focus on pediatric care coordination models is essential, advancements in healthcare have increased the life expectancy of CMC (Tennant, Pearce, Bythell, & Rankin, 2010) and the subsequent need for transition to adult systems of care. The ideal locus of transition is in primary care settings but with complex conditions (e.g., spina bifida), ongoing specialty care is critical and a consultative and co-management care model is essential (Cooley & Kemper, 2013).

TeleFamilies and PRoSPer are two models of pediatric care coordination for CMC that expand on Minnesota’s healthcare home model. A recent white paper from the Children’s Hospital Association concluded that “potential value from coordinating care for CMC goes first to the patient and family (i.e., with improved health and well-being) and second to the payor (i.e., with decreased health care costs from less inpatient resource use)” (Berry et al., 2013, p. 9). While the PRoSPer model is still undergoing implementation and evaluation, findings from the TeleFamilies model support the notion that the value of coordinated care is first in patient and family outcomes. Replication, refinement, and evaluation of the models described in this article are needed to increase the evidence-base of care coordination for CMC and to document the fundamental role of nursing in this game-changing aspect of care.

Acknowledgement: The authors would like to acknowledge the unique contributions of Mary Erickson, the TeleFamilies APRN care coordinator. The authors would also like to thank the many families that participated in the design, implementation and evaluation of the TeleFamilies and PRoSPer models.

Authors

Rhonda G. Cady, PhD, RN
E-mail: rhondagcady@gillettechildrens.com

Rhonda is a nursing research specialist at Gillette Children's Specialty Healthcare, St. Paul, MN. Her research focuses on patient education, telehealth, and care coordination for children with special health needs. She was a post-doctoral fellow on the NIH-funded TeleFamilies clinical trial and is the principal investigator and co-developer of the PRoSPer model of primary– specialty care coordination.

Wendy S. Looman, PhD, APRN, CNP
E-mail: looma003@umn.edu

Wendy is a certified pediatric nurse practitioner and associate professor, University of Minnesota School of Nursing in Minneapolis, MN. Her research, teaching, and clinical practice focus on the care of families caring for children with special healthcare needs. She was co-investigator on the NIH-funded TeleFamilies clinical trial and co-developed the study’s APRN model of telehealth care coordination for children with medical complexity. She practices clinically as part of a multidisciplinary team for children with cleft and craniofacial conditions.

Linda L. Lindeke, PhD, APRN, CNP, FAAN
E-mail: linde001@umn.edu

Linda is a certified pediatric nurse practitioner and associate professor, University of Minnesota School of Nursing in Minneapolis MN. As core faculty for the Center for Children with Special Health Care Needs, she provides graduate education as well as continuing education for nurses and other audiences in a variety of settings (i.e. professional organizations, childcare agencies, higher education programs and community agencies). She practices weekly in a high-risk neonatal intensive care follow-up clinic, coordinating care for children born prematurely and their families.

Bonnie LaPlante, MHA, RN
E-mail: Bonnie.LaPlante@state.mn.us

Bonnie is director of the Health Care Home (HCH) program, in the Health Policy Division, at the Minnesota Department of Health. She works with clinics and stakeholders across Minnesota to transform primary care and to implement HCH. She has sixteen years of leadership experience as a Clinic Services Nursing Director at a Multispecialty Clinic as well as other healthcare experience as a Director of a Home Health agency and a Coordinator in Long term Care. Bonnie received her master’s degree from Des Moines University and her bachelor’s degree from the University of Minnesota.

Barbara Lundeen, MS, RN, PHN
E-mail: Barbara.Lundeen@state.mn.us

Barb has spent over 30 years working as a public health nurse at both the local and state level in Minnesota. The majority of the years she has been a public health nurse consultant with Children and Youth with Special Health Needs at the Minnesota Department of Health (MDH). Her interest and specialty is working with youth of transition age. She currently manages the PRoSPer care coordination grant with Gillette Children’s Specialty Healthcare. She received a Bachelor of Science in Nursing from Winona State University and a Masters of Arts degree in Gerontology from Bethel University.

Amanda Seeley, MSN, APRN, CNP
E-mail: ASeeley@gillettechildrens.com

Amanda is a certified pediatric nurse practitioner in pediatric neurosurgery at Gillette Children's Specialty Healthcare. Her clinical practice focuses on improving health of children with special health care needs and their families. She is also a Doctorate of Nursing Practice (DNP) student and her doctoral project centers around transition planning for adolescents with spina bifida through a nursing care coordination model.

Mary E. Kautto, MA, BSN, RN
E-mail: MaryEKautto@gillettechildrens.com

Mary is a master’s prepared registered nurse who has worked with children with complex medical needs for over thirty years. She has held many roles during her career which include direct patient care, nurse educator, nurse manager, and care coordinator. Her current role at Gillette Children’s Specialty Healthcare is a combination of care coordination and marketing. In this role, she is responsible to help patients and families navigate the healthcare system, and support primary care providers in rural areas.

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© 2015 OJIN: The Online Journal of Issues in Nursing
Article published September 30, 2015


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