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Pediatric Palliative Care in the Medical Neighborhood for Children With Medical Complexity.

Children with medical complexity (CMC) have multiple, severe chronic health conditions that result in significant health care needs, health care utilization, and functional limitations (Cohen, Jovcevska, Kuo, & Mahant, 2011). They disproportionately account for up to one third of all pediatric health care spending (Berry et al, 2013; Neff, Sharp, Muldoon, Graham, & Myers, 2004) and have the highest risk of all children for poor health outcomes (Bramlett, Read, Bethell, & Blumberg, 2009). In turn, their caregivers experience considerable direct medical care responsibilities, care coordination expectations, and socioeconomic hardships (Kuo, Cohen, Agrawal, Berry, & Casey, 2011). To address these issues and improve health care experiences of CMC and their families, national pediatric societies have repeatedly endorsed the patient- and family-centered medical home as the ideal care model for this population (Kuo, Houtrow, & Council on Children With Disabilities, 2016).

Concurrent with the rise in the prevalence and increased survival of CMC, the field of specialty pediatric palliative care (PPC) has emerged to improve quality of life, reduce various forms of distress, and, when applicable, provide end-of-life care for children living with life-limiting illness or life-threatening conditions (Feudtner, Feinstein, Satchell, Zhao, & Kang, 2007; Section on Hospice and Palliative Medicine and Committee on Hospital Care, 2013). Though the number of specialty PPC providers and programs has grown, and these are now present at many children's hospitals (Feudtner et al., 2013), the demand for specialty PPC is outgrowing the supply of providers (Quill & Abernethy, 2013). Therefore, considering how palliative care principles can be incorporated into the medical home for CMC, with or without access to specialty PPC providers, is imperative.

In this report, we explore how PPC and the medical home framework, if provided together, can comprehensively address the domains of medical complexity. First, we explain the rationale for integrating core palliative care principles into the CMC medical home. Second, we discuss how PPC specialists can support the CMC medical home by becoming better "medical neighbors." Lastly, we describe the fundamental elements of PPC that all CMC clinicians should be competent in, henceforth referred to as primary PPC.

The Intersection of CMC, PPC, and the Medical Home

Cohen, Kuo, et al.'s (2011) widely accepted definitional framework for CMC links four domains: chronic and severe health conditions, significant health service needs, major functional limitations, and high health care utilization. CMC are also highly dependent on medical technology (gastrostomy tubes, ventilators, etc.; Cohen et al., 2012). As survival of these children increases through medical advancements, the complexity of their care has left many traditional primary care models ill-equipped to adequately provide for these children (Agrawal et al., 2012; Kuo, Robbins, Burns, & Casey, 2011). In response, the pediatric community has renewed efforts to promote the medical home model for CMC and their families because of its commitment to comprehensiveness, patient- and family-centeredness, accessibility, care coordination, and quality and safety (Medical Home Initiatives for Children With Special Needs Project Advisory Committee, 2002; Kuo, Houtrow, et al., 2016; Scholle, Torda, Peikes, Han, & Genevro, 2010). Though this model of care has demonstrated significant improvements in health care effectiveness and provider satisfaction in the CMC population (Cohen, Jovcevska, et al., 2011; Homer et al., 2008; Kuo, Berry, et al., 2016; Mosquera et al., 2014), the proportion of CMC who receive such care remains low (Keller, 2016).

PPC is a discipline dedicated to relieving suffering, improving quality of life, and facilitating the decision-making process for children with life-threatening conditions (Section on Hospice and Palliative Medicine and Committee on Hospital Care, 2013). Comprehensive palliative care is comprised of eight core domains as characterized by the National Consensus Project Task Force (2013; see Table 1). A growing body of evidence demonstrates the benefits of specialty PPC: improved health-related quality of life and symptom control, less invasive care near the end of life, higher family satisfaction, and decreased health care utilization and costs (Conte, Mitton, Trenaman, Chavoshi, & Siden, 2015; Hays et al., 2006; Mitchell, Morris, Bennett, Sajid, & Dale, 2017). PPC is distinct from adult palliative care in several ways. Notably, all services (including hospice) are offered concurrently with curative and/or life-prolonging therapy and are not prognosis-dependent (Section on Hospice and Palliative Medicine and Committee on Hospital Care, 2013). PPC is often integrated earlier in disease processes and relationships with families are typically longer in duration compared with adult palliative care providers, allowing for greater continuity over a patient's illness course (Feudtner et al., 2011; Friebert & Williams, 2014). PPC teams also encounter a broader diversity of medical conditions and nonpain symptomology compared with adult providers, due to the high prevalence of genetic, congenital, and neuromuscular disorders among CMC, and are adept in developing strategies to overcome the barriers a child's functional limitations pose to participation in daily life (Ullrich & Morrison, 2013).

The fundamental principles of PPC align well with the patient- and family-centered medical home and, together, are well suited to address the domains of medical complexity (see Figure 1). Perhaps most importantly, palliative care is interdisciplinary and may involve physicians, nurses, social workers, chaplains, child-life specialists, nutritionists, pharmacists, and therapists. This team conducts a thorough assessment of the child and family, develops a comprehensive treatment plan to address all aspects of care, and meets regularly to adapt and integrate the individualized plan across all health care settings (Medical Home Initiatives for Children With Special Needs Project Advisory Committee, 2002). PPC recognizes the family unit as a child's primary source of strength and engages family members as full and equal partners in the shared decision-making process to ensure treatment plans reflect their goals and values (Section on Hospice and Palliative Medicine and Committee on Hospital Care, 2013; Kuo et al., 2012). Furthermore, PPC can augment the medical home by improving care coordination support, accessibility, and continuity of care. For example, PPC specialists are skilled in connecting families with community resources, obtaining specialty medications and equipment, and serving as constant and familiar guides through the health care system (Cady & Belew, 2017). Lastly, PPC maximizes family's strengths by considering their social, cultural, and spiritual background and incorporating rituals, traditions, and community members into the treatment plan (Friebert & Williams, 2014).

PPC Specialists as Medical Neighbors

At times, specialty PPC consultation will be necessary to meet all of the palliative care needs of CMC and their families. In these interactions, PPC specialists should be available and supportive to the primary clinicians--that is, to be good medical neighbors to the CMC medical home (American College of Physicians [ACP], 2010; Fisher, 2008). The "medical neighborhood" is a set of principles and expectations that connects specialists with the medical home into a unified team providing comprehensive and high-value care (ACP, 2010; Greenberg, Barnett, Spinks, Dudley, & Frolkis, 2014). The central goal of this framework is to optimize the coordination and integration of specialists' services to decrease fragmentation of care, improve the quality of referrals, and increase adherence to treatment recommendations (Greenberg et al., 2014; Laine, 2011). PPC providers are well suited to be ideal medical neighbors because the barriers that affect other specialists, such as the lack of financial incentives for care coordination, may not apply as many are not dependent on fee-for-service reimbursements (Taylor, Lake, Nysenbaum, Peterson, & Meyers, 2011).

To contribute to the medical neighborhood, PPC specialists must be willing to advise CMC clinicians prior to actual consultations, perform timely consults with bidirectional sharing of clinical information and recommendations, and formalize comanagement plans (Greenberg et al., 2014; Laine, 2011). The PPC team should help distribute individualized care plans to the entire medical neighborhood and ensure that information from inpatient interactions is shared with the medical home (Taylor et al., 2011). Clear guidelines for referral to specialty PPC, which reflect the capabilities and realities of each institution, should also be established. Table 2 offers a proposed framework of guidelines constructed around four domains addressing the unique palliative care needs of CMC and their families: symptom management, psychosocial support, care coordination, and communication (Gelfman, Kavalieratos, Teuteberg, Lala, & Goldstein, 2017; Quill & Abernethy, 2013). Lastly, PPC specialists can promote the long-term well-being of CMC medical home clinicians and staff, and their continued ability to meet the needs of CMC, by addressing these health care professionals' psychological, ethical, and spiritual needs through debriefings and educational programs (Section on Hospice and Palliative Medicine and Committee on Hospital Care, 2013).

To implement this framework, PPC specialists will need to be able to easily share and access clinical information with the medical home through a common electronic health record (Greenberg et al., 2014). Payment reforms that incentivize high-value PPC, such as direct payment for care coordination activities, may also better support the medical neighborhood (Taylor et al., 2011). Institutions could further bolster this model by adopting and reporting quality metrics that evaluate coordination with PPC, such as the Center to Advance Palliative Care's consultation service metrics (Weissman, Meier, & Spragens, 2008). In the future, policymakers could consider including access to specialty PPC as a criterion for CMC medical home certification and recognizing high-performing PPC providers through official "medical neighbor" accreditation (Taylor et al., 2011).

Lastly, PPC specialists should continue to market the benefits of their discipline to both caregivers and CMC clinicians to build new relationships (Kavalieratos et al., 2014). To connect with community providers external to academic pediatric institutions, PPC teams should ensure to register with the Get Palliative Care provider directory (Center to Advance Palliative Care, 2019) and consider personally engaging with community clinicians through site visits and educational presentations (Meier & Seiger, 2008). Additionally, PPC providers could adopt newer telemedicine opportunities that allow for video consultations, remote co-management, or even home-based PPC (Bradford, Armfield, Young, & Smith, 2013).

Primary Pediatric Palliative Care for CMC

CMC medical home clinicians should also be able to provide core elements of PPC, that is, primary PPC. Though some aspects of palliative care are central to any clinician's responsibilities to their patients, regardless of specialty (Quill & Abernethy, 2013), medical home clinicians' longitudinal relationships with CMC and their families also uniquely position them to build on existing trust and serve as guides through the shared decision-making process (Lakin et al., 2016). Reliance on a specialist-based model has inherent disadvantages as well. It is unlikely that enough PPC specialists will be trained to meet the palliative care needs for all CMC; therefore, complete dependence on specialty consultations would benefit a minority of this population (Lupu & American Academy of Hospice and Palliative Medicine Workforce Task Force, 2010). Overreliance on specialists also has the potential to fragment care further by adding additional layers of complexity, undermining the therapeutic relationships between CMC's primary care clinicians and families, and leading to deterioration of important skills like discussing prognosis and goals of care (Kaye, Friebert, & Baker, 2016). Here, we describe our proposed primary PPC skill set (see Table 2), which focuses on symptom management, psychosocial support, care coordination, and communication (Gelfman et al., 2017). Table 3 provides potential tools and resources for CMC clinicians to meet these goals.

Symptom Management

CMC experience a broad range of symptoms beyond pain, dyspnea, and nausea (Himelstein, Hilden, Boldt, & Weissman, 2004). They also commonly suffer seizures, neuroirritability, feeding intolerance, and sialorrhea (Hauer, Houtrow, & Section on Hospice and Palliative Medicine, Council on Children With Disabilities, 2017). CMC clinicians must be able to recognize, initially manage, and collaborate with specialists to address these symptoms. Screening tools, such as the r-FLACC (Face Legs Activity Cry and Consolability tool; Malviya, Voepel-Lewis, Burke, Merkel, & Tait, 2006) for pain assessment in children with cognitive impairment, exist to guide providers in symptom management (Malviya et al., 2006). Within the medical home, nurses could integrate screening instruments into their workflow and communicate concerning findings to the primary provider. For physicians and advanced providers, the Center to Advance Palliative Care (n.d.-a) has created a self-directed curriculum for providers to learn basic pain and symptom management (Pain and Symptom Management Curriculum). Additionally, CMC medical homes could partner with PPC specialists to develop evidence-based protocols and order templates, such as end-of-life checklists or opioid infusion order forms, for their home institutions (Duncan, Spengler, & Wolfe, 2007).

Psychosocial Support

The extraordinary levels of caregiver stress families of CMC experience make psychosocial support an essential component of primary PPC (Woodgate, Edwards, Ripat, Borton, & Rempel, 2015). Exploration of hopes, fears, strengths, and coping ability build rapport with families (Bradford et al., 2014). As CMC caregivers are at high risk for anxiety, depression, complicated grief, and existential distress, clinicians should be able to recognize risk factors and signs of these conditions and refer families to appropriate resources (therapists, chaplains, etc.; Himelstein et al., 2004). The medical home should also be able to assess family's basic spiritual and cultural concerns, like exploring religious issues relate to end-of-life care (Kaye et al., 2015) and providing bereavement services to prevent feelings of abandonment (Himelstein et al., 2004). Many screening tools, such as the FICA spiritual assessment tool (Borneman, Ferrell, & Puchalski, 2010) and the Impact on Family Scale (Stein & Jessop, 2003), are available. These assessments can be incorporated into the workflow of CMC medical home clinicians as well (e.g., social workers or nurse care managers). Adult mental health providers could then be integrated into the medical neighborhood for easier referral and collaboration (Elrashidi et al., 2018).

Care Coordination

Effective care coordination can improve families' quality of life by helping navigate the health care system, meet their child's needs, and keep all medical providers in sync (Kaye et al., 2015). CMC clinicians can meet this ideal by partnering with family stakeholders to perform a needs assessment unique to their patient population and leveraging the diverse skills of the medical home interdisciplinary team (Turchi, Antonelli, & Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee, 2014). A designated care coordinator familiar with individual families' needs could be particularly valuable. As families' primary point of contact, this person could simultaneously assume the majority of coordination activities, organize coordination efforts by the medical neighbors, and help create and modify shared written care plans with caregivers (Kuo, McAllister, Rossignol, Turchi, & Stille, 2018; McAllister, 2014).

To avoid redundancy and promote collaboration, CMC medical homes should also clearly define roles for all team members (Phillips, Hebish, Mann, Ching, & Blackmore, 2016), formalize comanagement plans with medical neighbors (Laine, 2011), and schedule regular interdisciplinary meetings with medical neighbors (Kuo et al., 2018). Medical home directors can train their teams in these principles and competencies using Boston Children's Hospital's Pediatric Care Coordination Curriculum (Antonelli, Browning, Hackett-Hunter, McAllister, & Risko, 2014). Lastly, engaging caregivers in coordination activities will, over time, enable many families to take charge of these responsibilities (Cady & Belew, 2017).

Communication

Transparent and compassionate communication alone can improve health care experiences. CMC clinicians should be capable of probing families' understanding of their child's medical condition(s), explaining prognosis and anticipatory guidance when known (McCormick, Chai, & Meier, 2012; Munoz-Mendoza, 2015), helping families acknowledge and make decisions in the face of prognostic uncertainty (Feudtner et al., 2011), and initiating discussions that consider cessation of life-sustaining interventions common among CMC (i.e., ventilatory support and artificial nutrition; Himelstein et al., 2004). CMC providers should also be able to assist with advance care planning (identifying decision makers, clarifying goals of care and treatment preferences) and distribute this documentation to all members of the care team (Gelfman et al., 2017).

Experiential educational opportunities for clinicians in any stage of their career (student, trainee, and midcareer) must be expanded as many pediatric providers are not comfortable with these aspects of communication (Accreditation Council for Graduate Medical Education, 2012; Brock, Cohen, Sourkes, Good, & Halamek, 2017; Kolarik, Walker, & Arnold, 2006). Programs such as VitalTalk have been operationalized for multiple subspecialties and could be applied to pediatric settings (Back et al., 2009). Furthermore, various components of communication can be entrusted to other members of the medical home if properly trained. Interventions in adult populations, such as the ENABLE II and ongoing CONNECT trials, have utilized nurse practitioners and registered nurses to deliver communication-focused palliative care (Bakitas et al., 2009; Schenker et al., 2015).

Policy Considerations

Integration of primary PPC skills into CMC clinicians' typical care will likely require reforms in training, institutional support, and the health system. First, a broadly accepted definition of primary PPC is needed to guide development of future educational initiatives (Carroll, Weisbrod, O'Connor, & Quill, 2018). These educational programs must then be incorporated into all levels of provider training and remain available throughout clinicians' careers (Downar, 2018). Second, academic institutions and national agencies should continue to fund and promote PPC research through programs such as the National Institute of Nursing Research's (n.d.) Palliative Care: Conversations Matter campaign. Third, the concurrent care provision of the Affordable Care Act (2010) will need to be maintained in order to ensure that CMC will remain eligible to receive hospice and palliative care services while also seeking all routine forms of life-prolonging medical care (Section on Hospice and Palliative Medicine and Committee on Hospital Care, 2013; Kaye et al., 2015).

Lastly, delivery of primary PPC services must be better compensated. Though delivery of PPC has been demonstrated to decrease health care utilization and costs while improving quality of life and health care experiences (Conte et al., 2015; Mitchell et al., 2017), under fee-for-service payments, PPC components like care coordination and psychosocial support, which are labor intensive and time consuming, are nonbillable. Alternative payment strategies like global payments with shared savings, pay-for-performance approaches and direct compensation for primary PPC activities, and/or bundled payments for episodes of care could better incentivize providers (Sinsky, 2011; Taylor et al., 2011). Research assessing which strategies best promote primary PPC and provide adequate return on investment is needed as evidence is lacking.

Conclusion

CMC are a vulnerable pediatric population in need of ongoing clinical and research efforts to improve patient and caregiver outcomes. As the principles of PPC are well-aligned with the goals of the patient- and family-centered medical home for these children, integration of palliative care can improve health care experiences significantly. For this to happen, medical home clinicians should possess a primary PPC skill set that addresses basic symptom management, psychosocial support, communication, and care coordination. Palliative care practitioners, as good medical neighbors, should expand their availability to advise and assist medical home clinicians, establish clear referral guidelines, and engage in professional and collaborative comanagement.

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Received November 13, 2018

Revision received February 25, 2019

Accepted March 13, 2019

Justin A. Yu, MD, Yael Schenker, MD, MAS, Scott H. Maurer, MD, Stacey C. Cook, MD, PhD, Dio Kavlieratos, PhD, and Amy Houtrow, MD, PhD, MPH

The University of Pittsburgh School of Medicine

This article was published Online First May 2, 2019.

Justin A. Yu, MD, and Yael Schenker, MD, MAS, Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, Department of Medicine, The University of Pittsburgh School of Medicine; Scott H. Maurer, MD, Division of Pediatric Hematology/Oncology and Blood and Marrow Transplantation, Department of Pediatrics, The University of Pittsburgh School of Medicine; Stacey C. Cook, MD, PhD, Department of Pediatrics, The University of Pittsburgh School of Medicine; Dio Kavlieratos, PhD, Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, Department of Medicine, The University of Pittsburgh School of Medicine; Amy Houtrow, MD, PhD, MPH, Division of Pediatric Rehabilitation Medicine, Department of Physical Medicine and Rehabilitation, The University of Pittsburgh School of Medicine.

Justin A. Yu, MD is supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award TL1TR001858. The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Correspondence concerning this article should be addressed to Justin A. Yu, MD, Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, Department of Medicine, The University of Pittsburgh School of Medicine, Iroquois Building Suite 308, 3600 Forbes Avenue, Pittsburgh, PA 15213. E-mail: yuja@upmc.edu

http://dx.doi.org/10.1037/fsh0000414
Table 1
Core Domains of Comprehensive Palliative Care

Domain                  Description

Structure and process   Delivery of care by an interdisciplinary
                        team that coordinates care across settings,
                        determines families' needs, and develops
                        a family-centered treatment plan.
Physical                Alleviation of physical distress through
                        treatment of pain and other symptoms
                        and minimization of impairment from
                        functional limitations.
Psychological and       Enabling emotional growth through treatment
psychiatric             of depression, anxiety, and grief with
                        robust psychosocial and bereavement support
                        and resources.
Social                  Reduction of illnesses' impact on schooling,
                        employment, and financial and housing security
                        through interventions that account for
                        families' strengths and vulnerabilities.
Spiritual, religious,   Respect for families' spiritual and
 and existential        religious beliefs, rituals, and practices
                        and incorporation of these traditions into
                        the care plan to address grief and
                        existential distress.
Cultural                Competence in and respect for different
                        cultural beliefs and traditions and
                        leveraging these to bring families strength
                        and support from their community.
Care at end of life     Aggressive symptom management, education
                        about the dying process, and addressing
                        families social, spiritual, and cultural
                        needs related to the end of life.
Ethical and legal       Assistance in clarification and completion
                        of advance care planning and basic competence
                        in common ethical/legal issues which arise in
                        care of the seriously ill.

Note. From Clinical Practice Guidelines for Quality Palliative Care
(National Consensus Project Task Force, 2013).

Table 2
Primary Pediatric Palliative Care Skills and Proposed Guidelines for
Referral to Specialist Pediatric Palliative Care

Domain          Primary PPC skill set    Guidelines for
                                         referral to
                                         specialty PPC

Symptom         * Recognition, basic     * End of life care
management      assessment, and          (i.e., dyspnea,
                initial management       agitation)
                of pain
                * Initial management     * Pain syndromes
                of nausea and vomiting,  refractory to first-line
                pruritus, and            trials of gabapentinoids
                breakthrough seizures    and tricyclic
                                         antidepressants
                * CMC specific:          * Ongoing symptoms
                initial management       (nausea,
                of neuroirritability,    neuroirritability,
                spasticity, sialorrhea,  etc.)  refractory
                and feeding intolerance  to first-line therapy
Psychosocial    * Rapport building       * Presence of complicated
support         and emotional support    grief or existential
                                         distress  in patient
                                         or family member
                * Anticipate and         * Request by patient or
                recognize complicated    caregiver for hastened
                grief, existential       death or assisted suicide
                distress, and mood
                disorders in patients
                and family members
                * Provide basic          * Symptoms of major
                bereavement support      depressive disorder
                * Spiritual and          (hopelessness, anhedonia)
                cultural competence      or debilitating anxiety
                                         (preventing participation
                                         in care) in family
                                         members
Care            * Assist in navigation   * Limited caregiver
 coordination   of local healthcare      support  and need
 &              system and provide       for assistance with
 accessibility  continuity over          around-the-clock
                illness course           accessibility for
                                         urgent  questions/issues
                * Facilitate access      * Challenging coordination
                to medications,          (multiple subspecialists,
                medical equipment,       new dependence on medical
                nursing/therapy, and     technology, complex home
                community resources      support)
                * Maintain strong        * Hospice referral
                relationships with
                subspecialists to
                ensure timely
                consultations,
                functional
                comanagement, and
                distribution of
                advance care and
                treatment preference
                documentation
Communication   * Assess family's        * Complex medical
                understanding of         decision making in
                medical condition        context of quality of life
                * Provide clear and      * Disagreement among
                compassionate            patients, caregivers, and/or
                explanation and          medical providers regarding
                anticipatory guidance    code  status, advance care
                about prognosis and      planning, and/or withdrawal
                disease trajectory       of life-sustaining therapies
                * Basic advance care     * Concerns about possible
                planning (assist with    treatment futility, other
                completion of advanced   ethical issues, and/or
                directives and explore   staff distress
                goals of care)
                * Initiate appropriate
                discussions about
                possible cessation
                of life-sustaining
                and other aggressive
                medical interventions

Note. From Gelfman, Kavalieratos, Teuteberg, Lala, and Goldstein
(2017), Quill and Abernethy (2013), Kaye et al. (2015), and Center to
Advance Palliative Care (n.d.-b). PPC = pediatric palliative care;
CMC = children with medical complexity.

Table 3
Primary Pediatric Palliative Care Tools and Training Resources for the
Medical Home for Children With Medical Complexity

Domains             Clinician tools and resources

Symptom management  Tools:
                    * Revised Face Legs Activity Cry and
                    Consolability pain assessment toll for children
                    with cognitive impairment (Malviya, Voepel-Lewis,
                    Burke, Merkel, & Tait, 2006)
                    * Pediatric Pain Profile assessment tool for
                    children with severe cognitive impairment
                    (Hunt et al., 2004)
                    * CAPC Opioid Order Form and End-of-Life Checklist
                    (CAPC, n.d.-b)
                    Training resources:
                    * Pain Assessment and Treatment in Children with
                    Significant Impairment of CNS (Hauer, Houtrow, &
                    Section on Hospice and Palliative Medicine,
                    Council on Children With Disabilities, 2017)
                    * Pediatric Fast Facts & Concepts (Palliative
                    Care Network of Wisconsin, n.d.)
                    * CAPC Symptom Management Curriculum
                    (CAPC, n.d.-a)
                    * Children's Hospice and Palliative Care
                    Coalition's (2019) Pediatric Webinar Series
Psychosocial        Tools:
support             * Impact on Family Scale (Stein et al., 2003)
                    * Parenting Stress Index (Abiding, 2012)
                    Training resources:
                    * National Hospice and Palliative Care
                    Organization's (n.d.) Pediatric Palliative Care
                    Resource Series (n.d.)
Care coordination   Tools:
& accessibility     * Family Experiences of Care Coordination
                    (Gidengil et al., 2017)
                    * Boston Children's Care Coordination Measurement
                    Tool (Antonelli, 2017)
                    Training resources:
                    * Boston Children's Hospital's Pediatric Care
                    Coordination Curriculum (Antonelli, Browning,
                    Hackett-Hunter, McAllister, & Risko, 2014)
                    * National Resource Center for
                    Patient/Family-Centered Medical Home (2018)
Communication       Tools:
                    * National Institute of Nursing Research's (n.d.)
                    Palliative Care: Conversations Matter
                    provider toolkit
                    * Children's Hospice and Palliative Care
                    Coalition's (n.d.) Pediatric Decision Aids
                    Training resources:
                    * CAPC's Communication Curriculum (CAPC, n.d.-b)
                    * End-of-Life Nursing Education Consortium's
                    (n.d.) Pediatric Palliative Care Curriculum

Note. "Tools" represent assessment/screening measures and clinical
practice aids that can be incorporated into workflow of the medical
home and assist clinicians in providing primary pediatric palliative
care. CAPC = Center to Advance Palliative Care. CNS = Central Nervous
System.
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Title Annotation:CONCEPTUAL ARTICLE
Author:Yu, Justin A.; Schenker, Yael; Maurer, Scott H.; Cook, Stacey C.; Kavlieratos, Dio; Houtrow, Amy
Publication:Families, Systems & Health
Article Type:Report
Date:Jun 1, 2019
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