Challenging Case
Medically Complex Care: The Newest Competency for Primary Care? Jack Maypole, MD,* Matthew D. Sadof, MD,† Marilyn Augustyn, MD* CASE: Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to your practice in the company of her foster caretaker, a maternal aunt. The history you have comes mostly through the lens of her aunt’s recall of a variety of clinical encounters and emergency room visits that have taken place at 2 of the region’s tertiary care centers, including a prolonged recent hospitalization for failure to thrive. Regrettably, you have no discharge summary on hand from the outside institution. Fortunately, Nola’s aunt has come prepared. From her notes, you learn that Nola has a history of feeding difficulties and “global developmental delay.” The details of Nola’s prenatal and neonatal intensive care unit admission are scant. Nola has been described as having “unusual facial features, such as smallish eyes, low tone, some vision problems.” A physical examination demonstrates significant delays in all streams of development. Nola’s aunt recalls that she may need a gastrostomy tube pending her weight gain in the next few months. At present, Nola’s aunt/foster caretaker is caring for her at home and expresses her concern about 4 major areas: coordinating multiple appointments at various sites, keeping track of involved medical information, getting all of the “paperwork” done to get needed upgrades for a feeding chair, and buying expensive special formula with her own money. Nola’s aunt is intelligent and motivated, but she has limited help at home and is overwhelmed with all the aspects of the care. The aunt acknowledges the importance of multiple appointments—feeding support, developmental evaluations, vision, and neurologic assessments. When you inquire who Nola’s aunt identifies as her niece’s primary care provider, she reports that she has seen different doctors due to the vagaries of her schedule. You conclude that Nola’s situation is not likely to improve without a dramatic intervention. As you try to pull together a plan, you wonder what the most effective approach is for the busy clinician. Who should take the lead on a child’s care? Can a primary care pediatric clinician partner with other specialists and programs and use other members of a care team effectively? And, does care coordination provide better more cost-effective care? (J Dev Behav Pediatr 36:469–470, 2015) Index terms: complex care, chronic disease, care coordination.
Matthew D. Sadof, MD Knowing how to rapidly assess this complex child is an important clinical skill. Assessment of this child in the context of the family environment and the medical home neighborhood will significantly aid in the care. The HEADS AT tool1 originally developed as a road map for resident education can be applied here. This tool divides the child’s environment into discrete spheres of influence that are independent of any disease state. These spheres include Home, Education, Activities, Development/Mental Health, Specialist Review, Agencies, and Transitions. In each sphere, a SNAP analysis is performed (Status, Needs, Available resources, and Plans/next steps). The Home section describes the household composition, equipment in the home, the daily routines, and
From the *Division of Developmental and Behavioral Pediatrics, Boston Medical Center, Boston University School of Medicine, Boston, MA; †Division of Academic General Pediatrics and Adolescent Medicine, Department of Pediatrics, Baystate Children’s Hospital, Tufts University School of Medicine, Boston, MA. Disclosure: All authors receive support from the CMMI Round Two Innovation Award for Massachusetts Alliance for Complex Care (MACC). Copyright Ó 2015 Wolters Kluwer Health, Inc. All rights reserved.
Vol. 36, No. 6, July/August 2015
sleeping and feeding. The Education section identifies accommodations being made for disability (Section 504 of the civil rights law), the individualized family service plan for Early Intervention or the Individualized Educational Plan for children older than 3 years. The Activities section describes how the family and the child integrate with the community. The Development and Mental Health section briefly describes the child developmentally and identifies mental health concerns of the child and family. The Specialist section is used to describe and coordinate care delivered by specialty services, update medications and changes in treatment plans, and clarify upcoming appointments. The Ancillary section describes the supportive agencies and therapies that help the child stay well in the medical home neighborhood. The Transition section includes transitions including hospital to home, home to school, pediatric to adult care, end-of-life issues, and family goals for care.
REFERENCE 1. Sadof M, Gortakowski M, Stechenberg B, et al. The “HEADS AT” training tool for residents: a roadmap for caring for children with medical complexity. Clin Pediatr (Phila). 2014;1–5. www.jdbp.org | 469
Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Jack Maypole, MD Nola represents the most costly subsegment of children and adolescents with special health care needs: the child with medical complexity (CMC). Their complexity may stem from one or more domains including enhanced needs for educational or home or community-based services; one or more chronic complex conditions that render them as a medically fragile child; functional limitations such as dependence on technology (e.g., tracheostomy or gastrostomy tube); and dramatically higher rates of health utilization (e.g., emergency room use, admissions, procedures, etc.).1 These “superutilizers” of systems of care are gaining recognition as a challenging cohort to primary care clinicians and payers, as systems of care evolve to meet their needs. While amounting to less than 1% of the pediatric population, children with medical complexity may account for upwards of 30% of pediatric health costs. Consequently, primary care and other providers soon recognize that these children pose multifaceted challenges on conditions about which they may be less familiar, require resources with which they have less information, and require coordination and administrative time that may be uncompensated and hard to come by. Ideally, as outlined by Berry et al,2 the care of the CMC should have essential components, paralleling those of the traditional medical home: a dedicated provider (RN/NP/ MD/PCP or specialist) who is knowledgeable about the child and family history and their needs over time; care that is coordinated and communicated among team members; and care that engages the family, including planning proactively to establish goals, optimize function, and the family’s quality of life. Ideally, care plans can be developed collaboratively for times of illness or crises. Care coordination for the CMC enhances a child’s quality of life and can profoundly lower costs for the sickest children. Established, hospital-based programs that offer robust care coordination services, including social workers and patient and family navigators, have resulted in a dramatic reduction in ER overutilization and hospital admissions and a savings of over $10,000 per year in each child.3 However, for the clinician situated outside of a coordinated program, where should a specialty or primary care provider begin? Providers in community or even specialty-based clinics may gain more traction by engaging with allied providers, including patient or family navigators who can assess a family’s needs, identify their goals, and assist the medical team in formulating a viable plan consistent with a family’s time and resources. Special consideration of these patients, such as longer appointment times and clustering of appointments, can lower provider stress and enhance the engagement of family providers by lowering their stress and improving their quality of life with fewer days missed from school and work. Mobilizing Support for the caretakers, having a social worker refer Nola’s aunt to a support group or counselor, for example, also fosters long-term strengths in the family system. Working collaboratively with one’s clinical staff or comanaging these patients with partnering specialty 470 Challenging Case
programs can help identify and address the barriers to care. Ideally, family engagement can be enhanced by addressing the “low-hanging fruit.” The inclusion of family input to develop care plans may reduce utilization of costly ER and inpatient services while offering tools, building knowledge and support for the family.4
REFERENCES 1. Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529–538. 2. Berry J, Agrawal R, Cohen E, et al. The landscape of medical care for children with medical complexity. 2013. Available at: https:// www.childrenshospitals.org/;/media/Files/CHA/Main/Issues_and_ Advocacy/Key_Issues/Children_With_Medical_Complexity/Issue% 20Briefs%20and%20Reports/LandscapeOfMedicalCare_06252013. pdf. Accessed April 25, 2015. 3. Mosquera RA, Avritscher EC, Samuels CL, et al. Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial. JAMA. 2014;312:2640–2648. 4. Berry J, Hall M, Neff J, et al. Children with medical complexity and Medicaid: spending and cost savings. Health Aff (Millwood). 2014;33: 2199–2206.
Marilyn Augustyn, MD Care of the child with medical complexity is the newest skill set that has been added to the toolbox of primary care and with good reason. Hospitalization rates of children with diagnoses in more than 1 complex care condition increased from 83.7 per 100,000 (1991–1993) to 166 per 100,000 (2003–2005).1 As medical technology has become more successful in preventing mortality while increasing chronic morbidity in some children, the need for constant retraining and updates is critical to a clinician’s capacity to support a child and family. To add to the challenge, disparity exists for access to care for these children. A review of the 2005 to 2006 and 2009 to 2010 National Survey of Children with Special Health Care Needs found that children with medical complexity were twice as likely to have at least 1 unmet need, compared with children without medical complexity.2 Unmet needs included preventive health care, dental care, occupational or physical therapy, and speech and language therapy as well as mental health services. Among children with medical complexity, unmet need was not associated with primary language, income level, or having Medicaid. They concluded that medical complexity itself can be a primary determinant of unmet needs. Now, we need to get to work to prepare and evolve our systems of care and services for this increasing community of children, for as the adage goes “if you build it, they will come.”
REFERENCES 1. Burns KH, Casey PH, Lyle RE, et al. Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010;126:638–646. 2. Kuo DZ, Goudie A, Cohen E, et al. Inequalities in health care needs for children with medical complexity. Health Aff (Millwood). 2014; 33:2190–2198.
Journal of Developmental & Behavioral Pediatrics
Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Medically Complex Care: The Newest Competency for Primary Care? Jack Maypole, MD,* Matthew D. Sadof, MD,† Marilyn Augustyn, MD* CASE: Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to your practice in the company of her foster caretaker, a maternal aunt. The history you have comes mostly through the lens of her aunt’s recall of a variety of clinical encounters and emergency room visits that have taken place at 2 of the region’s tertiary care centers, including a prolonged recent hospitalization for failure to thrive. Regrettably, you have no discharge summary on hand from the outside institution. Fortunately, Nola’s aunt has come prepared. From her notes, you learn that Nola has a history of feeding difficulties and “global developmental delay.” The details of Nola’s prenatal and neonatal intensive care unit admission are scant. Nola has been described as having “unusual facial features, such as smallish eyes, low tone, some vision problems.” A physical examination demonstrates significant delays in all streams of development. Nola’s aunt recalls that she may need a gastrostomy tube pending her weight gain in the next few months. At present, Nola’s aunt/foster caretaker is caring for her at home and expresses her concern about 4 major areas: coordinating multiple appointments at various sites, keeping track of involved medical information, getting all of the “paperwork” done to get needed upgrades for a feeding chair, and buying expensive special formula with her own money. Nola’s aunt is intelligent and motivated, but she has limited help at home and is overwhelmed with all the aspects of the care. The aunt acknowledges the importance of multiple appointments—feeding support, developmental evaluations, vision, and neurologic assessments. When you inquire who Nola’s aunt identifies as her niece’s primary care provider, she reports that she has seen different doctors due to the vagaries of her schedule. You conclude that Nola’s situation is not likely to improve without a dramatic intervention. As you try to pull together a plan, you wonder what the most effective approach is for the busy clinician. Who should take the lead on a child’s care? Can a primary care pediatric clinician partner with other specialists and programs and use other members of a care team effectively? And, does care coordination provide better more cost-effective care? (J Dev Behav Pediatr 36:469–470, 2015) Index terms: complex care, chronic disease, care coordination.
Matthew D. Sadof, MD Knowing how to rapidly assess this complex child is an important clinical skill. Assessment of this child in the context of the family environment and the medical home neighborhood will significantly aid in the care. The HEADS AT tool1 originally developed as a road map for resident education can be applied here. This tool divides the child’s environment into discrete spheres of influence that are independent of any disease state. These spheres include Home, Education, Activities, Development/Mental Health, Specialist Review, Agencies, and Transitions. In each sphere, a SNAP analysis is performed (Status, Needs, Available resources, and Plans/next steps). The Home section describes the household composition, equipment in the home, the daily routines, and
From the *Division of Developmental and Behavioral Pediatrics, Boston Medical Center, Boston University School of Medicine, Boston, MA; †Division of Academic General Pediatrics and Adolescent Medicine, Department of Pediatrics, Baystate Children’s Hospital, Tufts University School of Medicine, Boston, MA. Disclosure: All authors receive support from the CMMI Round Two Innovation Award for Massachusetts Alliance for Complex Care (MACC). Copyright Ó 2015 Wolters Kluwer Health, Inc. All rights reserved.
Vol. 36, No. 6, July/August 2015
sleeping and feeding. The Education section identifies accommodations being made for disability (Section 504 of the civil rights law), the individualized family service plan for Early Intervention or the Individualized Educational Plan for children older than 3 years. The Activities section describes how the family and the child integrate with the community. The Development and Mental Health section briefly describes the child developmentally and identifies mental health concerns of the child and family. The Specialist section is used to describe and coordinate care delivered by specialty services, update medications and changes in treatment plans, and clarify upcoming appointments. The Ancillary section describes the supportive agencies and therapies that help the child stay well in the medical home neighborhood. The Transition section includes transitions including hospital to home, home to school, pediatric to adult care, end-of-life issues, and family goals for care.
REFERENCE 1. Sadof M, Gortakowski M, Stechenberg B, et al. The “HEADS AT” training tool for residents: a roadmap for caring for children with medical complexity. Clin Pediatr (Phila). 2014;1–5. www.jdbp.org | 469
Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Jack Maypole, MD Nola represents the most costly subsegment of children and adolescents with special health care needs: the child with medical complexity (CMC). Their complexity may stem from one or more domains including enhanced needs for educational or home or community-based services; one or more chronic complex conditions that render them as a medically fragile child; functional limitations such as dependence on technology (e.g., tracheostomy or gastrostomy tube); and dramatically higher rates of health utilization (e.g., emergency room use, admissions, procedures, etc.).1 These “superutilizers” of systems of care are gaining recognition as a challenging cohort to primary care clinicians and payers, as systems of care evolve to meet their needs. While amounting to less than 1% of the pediatric population, children with medical complexity may account for upwards of 30% of pediatric health costs. Consequently, primary care and other providers soon recognize that these children pose multifaceted challenges on conditions about which they may be less familiar, require resources with which they have less information, and require coordination and administrative time that may be uncompensated and hard to come by. Ideally, as outlined by Berry et al,2 the care of the CMC should have essential components, paralleling those of the traditional medical home: a dedicated provider (RN/NP/ MD/PCP or specialist) who is knowledgeable about the child and family history and their needs over time; care that is coordinated and communicated among team members; and care that engages the family, including planning proactively to establish goals, optimize function, and the family’s quality of life. Ideally, care plans can be developed collaboratively for times of illness or crises. Care coordination for the CMC enhances a child’s quality of life and can profoundly lower costs for the sickest children. Established, hospital-based programs that offer robust care coordination services, including social workers and patient and family navigators, have resulted in a dramatic reduction in ER overutilization and hospital admissions and a savings of over $10,000 per year in each child.3 However, for the clinician situated outside of a coordinated program, where should a specialty or primary care provider begin? Providers in community or even specialty-based clinics may gain more traction by engaging with allied providers, including patient or family navigators who can assess a family’s needs, identify their goals, and assist the medical team in formulating a viable plan consistent with a family’s time and resources. Special consideration of these patients, such as longer appointment times and clustering of appointments, can lower provider stress and enhance the engagement of family providers by lowering their stress and improving their quality of life with fewer days missed from school and work. Mobilizing Support for the caretakers, having a social worker refer Nola’s aunt to a support group or counselor, for example, also fosters long-term strengths in the family system. Working collaboratively with one’s clinical staff or comanaging these patients with partnering specialty 470 Challenging Case
programs can help identify and address the barriers to care. Ideally, family engagement can be enhanced by addressing the “low-hanging fruit.” The inclusion of family input to develop care plans may reduce utilization of costly ER and inpatient services while offering tools, building knowledge and support for the family.4
REFERENCES 1. Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529–538. 2. Berry J, Agrawal R, Cohen E, et al. The landscape of medical care for children with medical complexity. 2013. Available at: https:// www.childrenshospitals.org/;/media/Files/CHA/Main/Issues_and_ Advocacy/Key_Issues/Children_With_Medical_Complexity/Issue% 20Briefs%20and%20Reports/LandscapeOfMedicalCare_06252013. pdf. Accessed April 25, 2015. 3. Mosquera RA, Avritscher EC, Samuels CL, et al. Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial. JAMA. 2014;312:2640–2648. 4. Berry J, Hall M, Neff J, et al. Children with medical complexity and Medicaid: spending and cost savings. Health Aff (Millwood). 2014;33: 2199–2206.
Marilyn Augustyn, MD Care of the child with medical complexity is the newest skill set that has been added to the toolbox of primary care and with good reason. Hospitalization rates of children with diagnoses in more than 1 complex care condition increased from 83.7 per 100,000 (1991–1993) to 166 per 100,000 (2003–2005).1 As medical technology has become more successful in preventing mortality while increasing chronic morbidity in some children, the need for constant retraining and updates is critical to a clinician’s capacity to support a child and family. To add to the challenge, disparity exists for access to care for these children. A review of the 2005 to 2006 and 2009 to 2010 National Survey of Children with Special Health Care Needs found that children with medical complexity were twice as likely to have at least 1 unmet need, compared with children without medical complexity.2 Unmet needs included preventive health care, dental care, occupational or physical therapy, and speech and language therapy as well as mental health services. Among children with medical complexity, unmet need was not associated with primary language, income level, or having Medicaid. They concluded that medical complexity itself can be a primary determinant of unmet needs. Now, we need to get to work to prepare and evolve our systems of care and services for this increasing community of children, for as the adage goes “if you build it, they will come.”
REFERENCES 1. Burns KH, Casey PH, Lyle RE, et al. Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010;126:638–646. 2. Kuo DZ, Goudie A, Cohen E, et al. Inequalities in health care needs for children with medical complexity. Health Aff (Millwood). 2014; 33:2190–2198.
Journal of Developmental & Behavioral Pediatrics
Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
