Self-management improves health outcomes in chronic illness not only by improving adherence to the treatment plan but also by building the individual’s capacity to navigate challenges and solve problems. Support for self-management is a critical need among children and adolescents with (medically and/or socially) complex chronic conditions. Self-management support refers to services that health systems and community agencies provide to persons with chronic illness and their families to facilitate self-management; it is a collaboration between the patient, family, and care providers. Evidence has guided the development of self-management support approaches and tools for adults and has led to an increased adoption of best practices in adult chronic illness care. However, adult models fail to account for some key differences between children and adults, namely, the integral role of parents and/or caregivers and youth development over time. There is a need for self-management support models that take into account the developmental trajectory across the pediatric age range. Effective approaches must also recognize that in pediatrics, self-management is really shared management between the youth and the parent(s) and/or caregiver(s). Health systems should design care to address self-management for pediatric patients. Although clinicians recognize the importance of self-management in youth with complex chronic conditions, they need standardized approaches and tools to do the following: assess the self-management skills of youth and families, assess modifiable environmental influences on chronic conditions, collaboratively set self-management goals, promote competence and eventual autonomy in youth, share the responsibility for self-management support among nonphysician members of the health care team, and leverage community resources for self-management support.

Shaun (not his real name) is a 16-year-old boy with sickle cell anemia and asthma who is a high school sophomore. Shaun has been hospitalized at least twice per year for the past 7 years and has had an episode of acute chest syndrome, for which he required care in the PICU for 3 days last year. His spleen was removed when he was 13 years old, but he doesn’t understand why. He gets pulmonary function tests every 6 months. One doctor told him it was because of his asthma, but his sickle cell nurse said it was because he had sickle cell anemia. He gets transcranial Doppler ultrasonography every year.

Last year, an MRI after a concerning Doppler study showed silent cerebral infarcts. This made his mother cry, but he doesn’t think it is a big deal because he feels fine except when he has pain crises. Shaun’s mother has scheduled neuropsychological testing after talking with the neurologist. She’s nervous because she thinks Shaun is having more trouble in school than he did before. He also seems frustrated by schoolwork and gives up easily. Shaun has missed many days of school because of appointments, fevers, and pain crises. The thing that bothers Shaun the most is that he can’t keep up on the basketball court with his friends. He gets short of breath quickly, and his inhaler doesn’t always help. He wants to play water polo like his friends, but he has trouble treading water.

Shaun sees multiple medical specialists, including his pediatrician, his pediatric pulmonologist, the sickle cell team (a hematologist, nurse coordinator, and social worker), and a neurologist. Going to all these appointments is challenging because the children’s hospital is an hour and a half away by bus (including 2 transfers), and the pulmonologist doesn’t have appointments available on the same day as the sickle cell clinic.

At today’s visit, Shaun reports he has done well following his action plan for preventing vaso-occlusive crises (staying hydrated and dressing warmly). Shaun and his mother talk about medications with the provider. Shaun has 3 pills to take before going to school, 1 to take with food at dinner, and 4 to take each evening. Shaun has the physical and cognitive skills necessary to self-administer the medications. Shaun’s family lives paycheck to paycheck. Sometimes toward the end of the month, when they don’t have enough food at home, Shaun skips his pills that require food to make sure his younger sister gets enough to eat. The care plan is revised so that Shaun takes the medication at school, where he receives free lunch, and after this, Shaun self-administers his medication without difficulty for several months.

One year later, Shaun has started to have trouble remembering his medicines, no matter how many times his mother reminds him. His MRI reveals no change, but neuropsychological testing reveals significant problems with attention. His mother speaks with the school psychologist about strategies to help him. Shaun and the psychologist create alerts on his phone to remind him to take his medications.

The following month at the sickle cell clinic, the medical team congratulates him on his successful problem-solving. Shaun asks the nurse in private if he could pass sickle cell anemia to his children. They discuss the fact that Shaun is sexually active with his girlfriend; the nurse provides contraception counseling. After this visit, Shaun starts to think about applying to a health professions program at the community college for next fall and considers the idea of working for a sickle cell program someday.

Children with medical complexity are at a high risk for adverse medical, developmental, psychosocial, and family outcomes1 and have functional limitations that may be associated with transient deficits or long-term disability.2 Chronic illness and disability place demands on children and families that may strain their personal resilience, economic resources, and social capital. Medical and social complexity are intertwined; social determinants of health may add considerable complexity even when the biomedical profile does not meet the definition of medically complex. Consider the following 2 children: 1 is a medically complex child, a toddler who was born prematurely and has cerebral palsy and respiratory, gastrointestinal, and cognitive issues; the other is a second-grade child who carries a single medical diagnosis of type 1 diabetes whose mother is a single parent with limited English proficiency and works 2 low-wage jobs. Although the intensity of their tertiary medical care needs may differ substantially, these children face an overlapping set of health-related challenges. For this reason, we include both medical and social complexity in our definition of children with complex chronic conditions. The case of Shaun, an adolescent with sickle cell anemia, demonstrates this interplay between medical and social factors.

Self-management is the set of behaviors that people engage in as part of living with a chronic health condition (Fig 1). Self-management includes a set of common tasks aimed at optimizing health and well-being for the individual with a chronic condition, such as medication adherence, symptom or biometric monitoring, nutrition, physical activity and/or fitness, skill-building, goal-setting, problem-solving, the use of an action plan, sleep, and stress reduction.3 Self-management tasks fall along a spectrum. They include responsibilities that are directly related to health care (such as checking blood glucose) as well as social and lifestyle behaviors that impact and are impacted by wellness in a more holistic sense (such as attending school, trying out for a football team, playing video games, or participating in an art class). Shaun’s story provides many examples of self-management behaviors. Taking medications, drinking plenty of fluids when trying to avert a pain crisis, attending to his schoolwork, sitting out on a basketball game because of shortness of breath, making a clinic appointment, and considering how he should weigh his sickle cell anemia in planning for his future are all examples of Shaun’s self-management. Self-management improves health outcomes not only by improving adherence to the treatment plan but also by building the patient’s capacity to navigate challenges and solve problems. In children and youth with complex chronic conditions, self-management is made more difficult by biomedical issues, social determinants of health, and the added logistical, financial, and psychosocial demands of chronic illness.

FIGURE 1

Self-management tasks.

FIGURE 1

Self-management tasks.

Close modal

Self-management support refers to the set of services that health systems and community agencies provide to persons with chronic illness and their families to facilitate self-management.4 Self-management support is a collaboration between the patient, family, and health care providers.5 In adults, self-management support is associated with improved health outcomes and patient experience.6,10 Self-management support is an established part of high-quality care for adults with chronic conditions.11,13 There are evidence-based best practices and care models to inform self-management support for a 55 year old with type 2 diabetes, obesity, and depression, for example, or for a 70 year old with heart failure, arthritis, and mobility limitations. Although there is evidence that supporting self-management in pediatrics improves chronic illness outcomes,14 self-management support models aren’t as well developed for children and adolescents with complex chronic conditions, and as a result, self-management support is not formally integrated into pediatric care.15 National expert and professional organizations that provide guidelines and tools for self-management support have thus far produced such resources that are primarily (or exclusively) adult focused.16,20 In fact the National Academy of Medicine’s Living Well report19 on this topic makes little mention of children and youth with chronic conditions.

The contrast between the well-developed arena of adult self-management support and the more nascent field of self-management support in pediatrics can be explained largely by some of the key differences that child health services researchers have noted between the 2 age groups.21,22 Three differences are particularly relevant and help explain this observed gap:

  1. Dependency. Whereas adults with multiple chronic conditions may rely on others in various ways (and those with serious, advanced illnesses or disability do depend on caregivers), most chronically ill adults have considerable autonomy in their daily lives. In contrast, children depend on parents and caregivers for some or all of their care, so pediatric care nearly always involves >1 agent of self-management.

  2. Development. The pediatric age range encompasses a spectrum across all facets of development: cognitive, motor, language, social, and emotional. At any point in time, youth capacity for self-management is evolving. Clinicians who serve children and adolescents tend to be adept at providing care that accounts for this developmental trajectory. However, there is little evidence about how to tailor support of self-management for youth at different stages of maturity.

  3. Differential epidemiology. A small number of diagnoses (eg, atherosclerosis, diabetes, hypertension, and arthritis) account for the majority of adult chronic illnesses, allowing primary care providers to develop great proficiency in their management, in most cases. This has also led to the development, evaluation, and implementation of generic interventions of chronic disease self-management for adults.6,12 In contrast, a vast array of diverse diagnoses, each with relatively low prevalence, is responsible for chronic illness in those aged <21 years. Primary care pediatricians typically manage the more common conditions, such as asthma, but must rely to varying degrees on subspecialists for some portion of care for children with complex chronic conditions. One consequence of this epidemiology is that health systems tend to create silos for different pediatric chronic conditions as compared with the generic perspective for adult chronic illness. Yet despite differences in the treatment of different diagnoses, pediatric chronic conditions share many common self-management elements (Fig 1). Researchers, clinicians, and health systems have been slow to take a generic approach to supporting pediatric self-management.

We sought to identify frameworks that might be used to address these challenges in self-management in pediatrics. We turned to 2 complementary models that could potentially serve as organizing frameworks for self-management in children with complex chronic conditions: the Pediatric Self-Management framework23 (Fig 2) and the International Classification of Functioning, Disability and Health24,25 (ICF) (Fig 3). Both models take a generic (as opposed to diagnosis-specific) view of pediatric chronic illness and disability, and both contribute to our understanding of self-management in pediatrics.

FIGURE 2

Pediatric self-management model. Self-management behaviors (left) operate within individual, family, community, and health care system domains. Modifiable and nonmodifiable, domain-specific influences impact self-management processes through underlying cognitive, emotional, and social processes. Self-management affects adherence and ultimately outcomes. TPN, total parenteral nutrition. (Reprinted with permission from Modi AC, Pai AL, Hommel KA, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics. 2012;129[2]. Available at: www.pediatrics.org/cgi/content/full/129/2/e473.)

FIGURE 2

Pediatric self-management model. Self-management behaviors (left) operate within individual, family, community, and health care system domains. Modifiable and nonmodifiable, domain-specific influences impact self-management processes through underlying cognitive, emotional, and social processes. Self-management affects adherence and ultimately outcomes. TPN, total parenteral nutrition. (Reprinted with permission from Modi AC, Pai AL, Hommel KA, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics. 2012;129[2]. Available at: www.pediatrics.org/cgi/content/full/129/2/e473.)

Close modal
FIGURE 3

Interactions among the components of the ICF. (Reprinted with permission from World Health Organization. International Classification of Functioning, Disability and Health: Child and Youth Version: ICF-CY. Geneva, Switzerland: World Health Organization; 2007.)

FIGURE 3

Interactions among the components of the ICF. (Reprinted with permission from World Health Organization. International Classification of Functioning, Disability and Health: Child and Youth Version: ICF-CY. Geneva, Switzerland: World Health Organization; 2007.)

Close modal

Modi et al23 proposed the Pediatric Self-Management framework as a way to examine multilevel, contextual influences that promote or detract from self-management behaviors across chronic conditions through cognitive, emotional, and social processes. As an adaptation of the Social Ecological Model,26 the Pediatric Self-Management framework enumerates a comprehensive list of individual-, family-, community-, and health system–level influences on pediatric self-management that ultimately affect youth adherence to treatment (Fig 3). The Social Ecological Model provides a vocabulary for discussing the environmental influences on health and health care ranging from the microsystem (eg, the family, household, school, and neighborhood) to broader societal and cultural realities (eg, economic policies and institutional racism). Factors at all these levels play a role in self-management27; Modi et al23 focus on the influences of these factors on pediatric self-management. In this framework, youth are placed at the center of this interconnected social system, and the authors suggest that pediatric self-management can only be understood when taking into account the complex influences at different levels.

The World Health Organization’s ICF24,25 provides a common framework for considering functioning and disability in the context of an individual’s health conditions and contextual factors (Fig 3). The ICF is used to integrate biomedical, psychosocial, and social-ecological perspectives and is centered on 3 core components for functioning28: body function (ie, physiology), activities (ie, skills and abilities), and participation (ie, the use of skills in a social context). Two contextual components, the environment (external) and personal (internal), influence functioning in dynamic and complex ways and can impact an individual’s capacity to perform skills, such as those described in Shaun’s case. The ICF has been applied in various pediatric settings: children with chronic illness and/or disability,29 adolescents who are transitioning from pediatric to adult health care systems,30,31 and children with medical complexity.28 Although, to our knowledge, it has not been used to explore self-management processes, we suggest that self-management tasks and behaviors can be mapped onto the ICF constructs of activities and participation, making the ICF a useful framework for examining the factors that influence chronic illness self-management in children and youth.

Taking a generic view, both of these frameworks provide an alternative to the silos of pediatric chronic illness and encourage a focus on common elements across conditions. A consideration of Shaun’s case in light of these 2 frameworks provides some additional insights into pediatric self-management:

A salient feature of both of these complementary frameworks is the influence of environmental context not just on pediatric health and health care but on pediatric self-management in particular. The Pediatric Self-Management framework points to environmental factors at the levels of the family, community, and health care system and classifies them as modifiable or nonmodifiable, suggesting that modifiable influences are the critical intervention targets. Making accommodations for barriers that cannot be altered and addressing those factors that can be improves the likelihood of successful self-management. The ICF similarly calls out the environmental context as an influence on the central functional domains. Among the environmental factors that influence self-management in Shaun’s case are the interplay between household financial resources and the school lunch program. Asking about home, school, and community environments to identify factors that influence a child’s health is a common part of pediatric practice. Standard approaches could help bring the same scrutiny to self-management as a discrete set of family and individual behaviors that are shared across different diagnoses.

Although it is clear that self-management of chronic health conditions does not occur in a vacuum, we as clinicians sometimes instruct children and families about self-management in isolation from contextual factors. Although a child or adolescent may have the capacity for self-management tasks (such as cognitive or motor skills), many factors may prevent him or her from performing it in daily life. Food insufficiency in Shaun’s household and his sense of responsibility for a younger sibling forced him to consider whether to take a pill that must be taken with food. Rather than focusing on educating Shaun about the importance of taking his medicine, his care team supported him by identifying this barrier and changing his regimen so he could take his medicine with lunch, which is provided at school.

The ICF distinguishes between 2 features of the activities and participation components: capacity and performance. Capacity is the individual’s intrinsic ability to complete a task or action in a standardized environment, whereas performance is how well the individual is able to actually perform the task in his or her own environment.32 When a young person’s capacity for a task exceeds his or her performance, the ICF points to potential barriers in the environment and personal contexts.33 For Shaun, environmental factors resulted in a capacity-performance gap. In other cases, personal factors (such as health beliefs, intrinsic motivation, or self-efficacy) can prevent a capable youth from performing effective self-management. The constructs of capacity and performance may be helpful to clinicians who are trying to assess and support youth self-management.

The construct of self-management arose first in the care of adults, in which case the patient is primarily in charge of self-care tasks.34 However, in pediatrics, even the term self-management is inherently challenging. In reality, the parent(s) and/or caregiver(s) and the child or adolescent must share the role of manager. The term shared management reflects this notion.35 Shaun’s sickle crisis prevention plan (which includes staying hydrated, dressing warmly in the winter, and problem-solving early symptoms of a pain crisis) provided a tool for shared management and an opportunity for him to assume a greater role over the course of elementary and middle school. During that time, the primary responsibility for ensuring that the care plan was followed shifted from Shaun’s mother to Shaun. Similarly, as an adolescent, he started having 1-on-1 visits with his sickle cell clinic nurse that allowed him to receive confidential sexual and behavioral health services. Pediatric clinicians intuitively focus self-management support efforts predominantly on the parents and caregivers of younger children and on the patient in the case of older adolescents. However, there is little empirical evidence to explicitly guide the transfer of locus of control from the parent and/or caregiver to the youth, and neither framework specifically addresses this issue.

Developing skills is at the heart of self-management. Competency evolves along a continuum, and mastery comes in steps. Whereas a beginner will struggle with new contingencies, the expert can successfully adapt.36 Over the course of his childhood, Shaun gained the ability to monitor his asthma symptoms, self-administer his β-agonist inhaler, and problem-solve when he experienced worsening shortness of breath. Shaun had a series of opportunities to practice these skills, which allowed him to gain both competence and confidence. Typically developing youth may grow into self-management as they gradually acquire more skills. Youth with developmental disabilities may follow a modified trajectory, as was the case when inattention (probably because of cerebral infarcts) became a significant problem for Shaun. By being mindful of the dynamic nature of youth development, clinicians and caregivers can tailor self-management support to the developmental trajectory. There is a lack of evidence-based tools to guide such tailoring. Strategies to promote self-management need to consider the competency stage of the individual (from novice to expert), the complexity of the activity, and the factors in the environment that may influence the task.37 

The Pediatric Self-Management and ICF frameworks emphasize some critical issues in pediatric self-management but do not address other key features, such as shared management in the context of the parent-child dyad or supporting youth along a developmental continuum. The considerable differences between adult and pediatric self-management make it difficult to simply adapt adult best practices to children and adolescents; more research is needed. Notwithstanding, best practices in adult self-management38 can provide some guidance for pediatric care. Below, we recommend some actions that health systems, clinicians, and families can take to promote self-management. These actions are consistent with the defining characteristics of the medical home39,40: accessibility, family centeredness, continuity, comprehensiveness, coordination, compassion, and cultural effectiveness. Our recommendations are built on previous calls to shore up the medical home model39 and design innovative health care–financing strategies41 (such as value-based purchasing) to ensure that health systems meet the needs of children with chronic illnesses or disabilities. Alongside these recommendations, we also articulate gaps that researchers and policymakers should address.

Care plans12,42 should be a foundation of care for youth with complex chronic conditions. They should set forth specific self-management goals, provide opportunities to practice specific skills in supportive environments,43 and address the respective roles of the youth and the parent or caregiver in shared management. Care plans should be readily available to the health care team and family and be updated regularly. Parents and caregivers should request care plans; clinicians should engage families in developing their care plans collaboratively.

Although care plans (or action plans) are an established best practice for some conditions, such as asthma,44 they have not been widely adopted in clinical practice. Quality-improvement efforts are needed to promote the implementation of care plans into routine care for youth with complex chronic conditions. Health systems should invest in integrating care plans into electronic health records to facilitate the sharing of the care plan among the stakeholders, including the family and care teams. Research is needed to develop and evaluate care plan templates that account for the evolution of self-management skills over time and are based on the youth developmental trajectory as well as the transfer of responsibility, and that can be used in children with a wide array of conditions.

Clinicians (including primary care physicians, nurse practitioners, and pediatric subspecialists) should routinely assess self-management skills, self-efficacy, and relevant environmental factors as the first step in supporting self-management. They should use behavior-change techniques to assist families in goal-setting and problem-solving. Current Procedural Terminology codes that can be used for services that support self-management in children and adolescents are shown in Table 1. Parents and caregivers should articulate their concerns about self-management and ask health care providers for care plans and to collaborate5 with them in shared management.

TABLE 1

CPT Codes That Can Be Used for Services That Support Self-Management in Children and Adolescents

Type of ServiceRationaleCPT Code and Service
Counselinga Self-management support requires counseling, often repeated encounters over time. 99401-4; preventive medicine counseling at an encounter separate from a preventive medicine visit45  
The code is time based. Providers should document the extent of the counseling.45  
This should be used for counseling that addresses self-management globally (eg, self-efficacy), not for counseling that is considered part of the treatment of a specific illness (eg, teaching asthma inhaler technique).45  
Screening Assessing youth ability to participate in self-care may be an important first step in supporting self-management. 99420; administration and interpretation of a health risk assessment45  
Developmental testing can inform the provider, family, and youth about potential areas in which to focus self-management efforts. 96110; developmental screening46  
96111; developmental testing by using standardized instruments with interpretation and report46  
This is often used in young children but may also be appropriate for older patients if the ability to participate in self-management is in question. 
Behavioral disorders may inhibit a young person’s ability to set goals and engage in self-care. 96127; brief emotional and/or behavioral assessment46  
Care management Oversight of care management of youth with complex medical problems is often needed but may be undercoded. 99490; chronic care management directed by a physician or other qualified health professional (up to 20 min per mo)47  
99487; complex chronic care management (60 min per mo)47  
99489; complex chronic care management (each additional 30 min)47  
Type of ServiceRationaleCPT Code and Service
Counselinga Self-management support requires counseling, often repeated encounters over time. 99401-4; preventive medicine counseling at an encounter separate from a preventive medicine visit45  
The code is time based. Providers should document the extent of the counseling.45  
This should be used for counseling that addresses self-management globally (eg, self-efficacy), not for counseling that is considered part of the treatment of a specific illness (eg, teaching asthma inhaler technique).45  
Screening Assessing youth ability to participate in self-care may be an important first step in supporting self-management. 99420; administration and interpretation of a health risk assessment45  
Developmental testing can inform the provider, family, and youth about potential areas in which to focus self-management efforts. 96110; developmental screening46  
96111; developmental testing by using standardized instruments with interpretation and report46  
This is often used in young children but may also be appropriate for older patients if the ability to participate in self-management is in question. 
Behavioral disorders may inhibit a young person’s ability to set goals and engage in self-care. 96127; brief emotional and/or behavioral assessment46  
Care management Oversight of care management of youth with complex medical problems is often needed but may be undercoded. 99490; chronic care management directed by a physician or other qualified health professional (up to 20 min per mo)47  
99487; complex chronic care management (60 min per mo)47  
99489; complex chronic care management (each additional 30 min)47  

CPT, Current Procedural Terminology.

a

These codes may not be reimbursed by some insurance plans, including Medicaid. In these situations, coding that is based on the time when >50% of the visit is dedicated to counseling may be considered.

Child health researchers should focus their efforts on developing methods for assessing self-management behaviors32 as well as assessment tools that are adapted for shared management. There is also a need for coaching models that adequately address the sharing and eventual transfer of self-management between parent and youth and the evolution of youth self-management along the developmental trajectory. Medical education should prepare clinicians to use behavior-change approaches that are collaborative rather than didactic (eg, motivational interviewing–based counseling and health coaching).

Health systems can best support self-management through the intentional design of team roles and structured health care encounters.12 Planned visits are structured encounters that are used to address chronic illness needs proactively44,48 and allow for a focus on self-management support. Providers should familiarize themselves with documentation and coding standards (Table 1) that are relevant to planned visits. Planned-visit models that were developed for adults should be adapted for pediatrics in ways that support emerging autonomy in a shared-management context.

The adult literature has come to define self-management as a team function rather than being the sole responsibility of the physician. Nurses, medical assistants, pharmacists, and lay health workers can all play a role in supporting self-management in chronically ill adults.49,53 There is a need to better understand the potential of such diverse team members to support self-management in youth with complex chronic conditions. Those in nursing and allied health education must prepare pediatric clinicians to play these roles. Supporting self-management may overwhelm providers who are already pressed for time. High-functioning teams with thoughtfully defined roles have the potential to mitigate this burden by optimizing each team member’s scope of practice.

When possible, clinicians should leverage community resources for self-management education and support.12 Admittedly, these are more available for the more common adult chronic conditions than for pediatric chronic conditions. By recognizing the central role of self-management across conditions, advocates for children should explore ways to focus the existing network of community agencies and tertiary-based resources on self-management support and lobby for services and policies to support self-management support for youth and families.

Clinicians, health systems, advocates, and researchers should build on the adult self-management best practices and incorporate pediatric evidence to develop, implement, and promote effective, patient- and/or family-centered, and feasible approaches to self-management support for children and adolescents with complex chronic conditions.

     
  • ICF

    International Classification of Functioning, Disability and Health

Dr Lozano conceptualized and designed the manuscript and drafted the initial manuscript; Dr Houtrow conceptualized and designed the manuscript and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted.

FUNDING: Supported by the Lucile Packard Foundation for Children’s Health.

1
Bramlett
MD
,
Read
D
,
Bethell
C
,
Blumberg
SJ
.
Differentiating subgroups of children with special health care needs by health status and complexity of health care needs.
Matern Child Health J
.
2009
;
13
(
2
):
151
163
[PubMed]
2
Cohen
E
,
Kuo
DZ
,
Agrawal
R
, et al
.
Children with medical complexity: an emerging population for clinical and research initiatives.
Pediatrics
.
2011
;
127
(
3
):
529
538
[PubMed]
3
Bodenheimer
T
,
Lorig
K
,
Holman
H
,
Grumbach
K
.
Patient self-management of chronic disease in primary care.
JAMA
.
2002
;
288
(
19
):
2469
2475
[PubMed]
4
Bodenheimer
T
,
Wagner
EH
,
Grumbach
K
.
Improving primary care for patients with chronic illness.
JAMA
.
2002
;
288
(
14
):
1775
1779
[PubMed]
5
Von Korff
M
,
Gruman
J
,
Schaefer
J
,
Curry
SJ
,
Wagner
EH
.
Collaborative management of chronic illness.
Ann Intern Med
.
1997
;
127
(
12
):
1097
1102
[PubMed]
6
Lorig
KR
,
Ritter
P
,
Stewart
AL
, et al
.
Chronic disease self-management program: 2-year health status and health care utilization outcomes.
Med Care
.
2001
;
39
(
11
):
1217
1223
[PubMed]
7
Chodosh
J
,
Morton
SC
,
Mojica
W
, et al
.
Meta-analysis: chronic disease self-management programs for older adults.
Ann Intern Med
.
2005
;
143
(
6
):
427
438
[PubMed]
8
Pillay
J
,
Armstrong
MJ
,
Butalia
S
, et al
.
Behavioral programs for type 2 diabetes mellitus: a systematic review and network meta-analysis.
Ann Intern Med
.
2015
;
163
(
11
):
848
860
[PubMed]
9
Reddy
M
,
Rilstone
S
,
Cooper
P
,
Oliver
NS
.
Type 1 diabetes in adults: supporting self management.
BMJ
.
2016
;
352
:
i998
[PubMed]
10
Coulter
A
,
Entwistle
VA
,
Eccles
A
,
Ryan
S
,
Shepperd
S
,
Perera
R
.
Personalised care planning for adults with chronic or long-term health conditions.
Cochrane Database Syst Rev
.
2015
;(
3
):
CD010523
[PubMed]
11
Stellefson
M
,
Dipnarine
K
,
Stopka
C
.
The chronic care model and diabetes management in US primary care settings: a systematic review.
Prev Chronic Dis
.
2013
;
10
:
E26
[PubMed]
12
Battersby
M
,
Von Korff
M
,
Schaefer
J
, et al
.
Twelve evidence-based principles for implementing self-management support in primary care.
Jt Comm J Qual Patient Saf
.
2010
;
36
(
12
):
561
570
[PubMed]
13
Renders
CM
,
Valk
GD
,
Griffin
S
,
Wagner
EH
,
Eijk
JT
,
Assendelft
WJ
.
Interventions to improve the management of diabetes mellitus in primary care, outpatient and community settings.
Cochrane Database Syst Rev
.
2001
;(
1
):
CD001481
[PubMed]
14
Guevara
JP
,
Wolf
FM
,
Grum
CM
,
Clark
NM
.
Effects of educational interventions for self management of asthma in children and adolescents: systematic review and meta-analysis.
BMJ
.
2003
;
326
(
7402
):
1308
1309
[PubMed]
15
Henry
HK
,
Schor
EL
.
Supporting self-management of chronic health problems.
Pediatrics
.
2015
;
135
(
5
):
789
792
[PubMed]
16
National Council on Aging
. Chronic disease self-management fact sheet. 2012. Available at: https://www.aarp.org/content/dam/aarp/livable-communities/learn/health/ncoa-chronic-disease-self-management-fact-sheet-aarp.pdf. Accessed January 19, 2018
17
Improving Chronic Illness Care
. Clinical practice change: self-management support. Available at: www.improvingchroniccare.org/index.php?p=SelfManagement_Support&s=39. Accessed December 1, 2016
18
Harris
JR
,
Wallace
RB
.
The Institute of Medicine’s new report on living well with chronic illness.
Prev Chronic Dis
.
2012
;
9
:
E148
[PubMed]
19
Institute of Medicine
.
Living Well With Chronic Illness: A Call for Public Health Action
.
Washington, DC
:
The National Academies Press
;
2012
20
Agency for Healthcare Research and Quality
. Self-management support. Available at: www.ahrq.gov/professionals/prevention-chronic-care/improve/self-mgmt/self/index.html. Accessed January 19, 2018
21
Forrest
CB
,
Simpson
L
,
Clancy
C
.
Child health services research. Challenges and opportunities.
JAMA
.
1997
;
277
(
22
):
1787
1793
[PubMed]
22
Stille
C
,
Turchi
RM
,
Antonelli
R
, et al;
Academic Pediatric Association Task Force on Family-Centered Medical Home
.
The family-centered medical home: specific considerations for child health research and policy.
Acad Pediatr
.
2010
;
10
(
4
):
211
217
[PubMed]
23
Modi
AC
,
Pai
AL
,
Hommel
KA
, et al
.
Pediatric self-management: a framework for research, practice, and policy.
Pediatrics
.
2012
;
129
(
2
). Available at: www.pediatrics.org/cgi/content/full/129/2/e473
[PubMed]
24
World Health Organization
.
International Classification of Functioning, Disability and Health: ICF
.
Geneva, Switzerland
:
World Health Organization
;
2001
25
World Health Organization
.
International Classification of Functioning, Disability and Health: Child and Youth Version: ICF-CY
.
Geneva, Switzerland
:
World Health Organization
;
2007
26
Brofenbrenner
U
.
The Ecology of Human Development: Experiments by Nature and Design
.
Boston, MA
:
Harvard College
;
1979
27
Fisher
EB
,
Brownson
CA
,
O’Toole
ML
,
Shetty
G
,
Anwuri
VV
,
Glasgow
RE
.
Ecological approaches to self-management: the case of diabetes.
Am J Public Health
.
2005
;
95
(
9
):
1523
1535
[PubMed]
28
Glader
L
,
Plews-Ogan
J
,
Agrawal
R
.
Children with medical complexity: creating a framework for care based on the International Classification of Functioning, Disability and Health.
Dev Med Child Neurol
.
2016
;
58
(
11
):
1116
1123
[PubMed]
29
McDougall
J
,
Horgan
K
,
Baldwin
P
,
Tucker
MA
,
Frid
P
.
Employing the International Classification of Functioning, Disability and Health to enhance services for children and youth with chronic physical health conditions and disabilities.
Paediatr Child Health
.
2008
;
13
(
3
):
173
178
[PubMed]
30
Nguyen
T
,
Gorter
JW
.
Use of the international classification of functioning, disability and health as a framework for transition from paediatric to adult healthcare.
Child Care Health Dev
.
2014
;
40
(
6
):
759
761
[PubMed]
31
Kraus de Camargo
O
.
Systems of care: transition from the bio-psycho-social perspective of the International Classification of Functioning, Disability and Health.
Child Care Health Dev
.
2011
;
37
(
6
):
792
799
[PubMed]
32
Almansa
J
,
Ayuso-Mateos
JL
,
Garin
O
, et al;
MHADIE Consortium
.
The International Classification of Functioning, Disability and Health: development of capacity and performance scales.
J Clin Epidemiol
.
2011
;
64
(
12
):
1400
1411
[PubMed]
33
Schneidert
M
,
Hurst
R
,
Miller
J
,
Ustün
B
.
The role of environment in the International Classification of Functioning, Disability and Health (ICF).
Disabil Rehabil
.
2003
;
25
(
11–12
):
588
595
[PubMed]
34
Lorig
KR
,
Holman
H
.
Self-management education: history, definition, outcomes, and mechanisms.
Ann Behav Med
.
2003
;
26
(
1
):
1
7
[PubMed]
35
Kieckhefer
GM
,
Trahms
CM
,
Churchill
SS
,
Simpson
JN
.
Measuring parent-child shared management of chronic illness.
Pediatr Nurs
.
2009
;
35
(
2
):
101
108, 127
36
Benner
P
.
From Novice to Expert
.
Menlo Park, CA
:
Addison-Wesley
;
1984
37
Rousseau
J
,
Potvin
L
,
Dutil
E
,
Falta
P
.
Model of competence: a conceptual framework for understanding the person-environment interaction for persons with motor disabilities.
Occup Ther Health Care
.
2002
;
16
(
1
):
15
36
[PubMed]
38
Coleman
MT
,
Newton
KS
.
Supporting self-management in patients with chronic illness.
Am Fam Physician
.
2005
;
72
(
8
):
1503
1510
[PubMed]
39
Medical Home Initiatives for Children With Special Needs Project Advisory Committee
;
American Academy of Pediatrics
.
The medical home.
Pediatrics
.
2002
;
110
(
1, pt 1
):
184
186
[PubMed]
40
Sia
C
,
Tonniges
TF
,
Osterhus
E
,
Taba
S
.
History of the medical home concept.
Pediatrics
.
2004
;
113
(
suppl 5
):
1473
1478
[PubMed]
41
Perrin
JM
.
Innovative health care financing strategies for children and youth with special health care needs.
Pediatrics
.
2017
;
139
(
suppl 2
):
S85
S88
[PubMed]
42
Lenzen
SA
,
Daniëls
R
,
van Bokhoven
MA
,
van der Weijden
T
,
Beurskens
A
.
Setting goals in chronic care: shared decision making as self-management support by the family physician.
Eur J Gen Pract
.
2015
;
21
(
2
):
138
144
[PubMed]
43
Smits
DW
,
Gorter
JW
,
van Schie
PE
,
Dallmeijer
AJ
,
Ketelaar
M
;
PERRIN+ Study Group
.
How do changes in motor capacity, motor capability, and motor performance relate in children and adolescents with cerebral palsy?
Arch Phys Med Rehabil
.
2014
;
95
(
8
):
1577
1584
[PubMed]
44
Britto
MT
,
Vockell
AL
,
Munafo
JK
, et al
.
Improving outcomes for underserved adolescents with asthma.
Pediatrics
.
2014
;
133
(
2
). Available at: www.pediatrics.org/cgi/content/full/133/2/e418
[PubMed]
45
American Academy of Pediatrics
.
Coding for Pediatric Preventative Care 2016
.
Elk Grove Village, IL
:
American Academy of Pediatrics and Bright Futures
;
2016
:
1
44
46
American Academy of Pediatrics
. Standardized screening/testing coding fact sheet for primary care pediatricians: developmental/behavioral/emotional. Available at: https://www.aap.org/en-us/Documents/coding_factsheet_developmentalscreeningtestingandEmotionalBehvioraassessment.pdf. Accessed January 19, 2018
47
American Academy of Pediatrics
. Coding at the AAP: 2016 CPT coding fact sheet. Available at: https://www.aap.org/en-us/professional-resources/practice-transformation/getting-paid/Coding-at-the-AAP/Pages/Coding-and-Payment.aspx
48
Bodenheimer
T
.
Planned visits to help patients self-manage chronic conditions.
Am Fam Physician
.
2005
;
72
(
8
):
1454, 1456
49
Bodenheimer
TS
,
Smith
MD
.
Primary care: proposed solutions to the physician shortage without training more physicians.
Health Aff (Millwood)
.
2013
;
32
(
11
):
1881
1886
[PubMed]
50
Chen
EH
,
Thom
DH
,
Hessler
DM
, et al
.
Using the Teamlet model to improve chronic care in an academic primary care practice.
J Gen Intern Med
.
2010
;
25
(
suppl 4
):
S610
S614
[PubMed]
51
Ladden
MD
,
Bodenheimer
T
,
Fishman
NW
, et al
.
The emerging primary care workforce: preliminary observations from the primary care team: learning from effective ambulatory practices project.
Acad Med
.
2013
;
88
(
12
):
1830
1834
[PubMed]
52
Saba
GW
,
Villela
TJ
,
Chen
E
,
Hammer
H
,
Bodenheimer
T
.
The myth of the lone physician: toward a collaborative alternative.
Ann Fam Med
.
2012
;
10
(
2
):
169
173
[PubMed]
53
Smith
M
,
Bates
DW
,
Bodenheimer
T
,
Cleary
PD
.
Why pharmacists belong in the medical home.
Health Aff (Millwood)
.
2010
;
29
(
5
):
906
913
[PubMed]

Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.