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Transitions of Care from Pediatric to Adult Services for Children with Special Healthcare Needs

Key Questions Draft

Background

Introduction

In the United States, nearly 20 percent of children under age 18 have a special healthcare need,1 defined as having or being at increased risk for chronic physical, developmental, behavioral, or emotional conditions.2 Often, these children need far more health and health-related services than the general pediatric population.2 Additionally, with advances in medicine, children with complex or chronic medical conditions are living longer than in the past. A growing number of these youth (approximately 4.5 million youth ages 12–18) are reaching young adulthood and must then transition from pediatric to adult providers and settings of care.3 Unfortunately, these transitions are often difficult, creating potential gaps in care and adverse health outcomes, leaving patients and families feeling frustrated.3-5

The difficulty with these transitions stems in part from an absence of clarity regarding the most effective approaches to manage them. To address this gap, in 2011 the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians published a framework for implementing care transitions for youth beginning in early adolescence.6 Based on these recommendations, Got Transition, the federally funded national resource center on healthcare transitions, developed a structured clinical approach for transitioning patients from pediatric to adult healthcare services. Called the "Six Core Elements of Health Care Transition," this approach includes: transition policy, transition tracking and monitoring, transition readiness, transition planning, transfer of care and transfer completion.7

To successfully execute these elements, healthcare providers have adopted a range of approaches to help smooth the transition from pediatric to adult healthcare services. These approaches include direct interventions with children and their caregivers, provider-focused trainings and implementation strategies, and new tools to facilitate communication between pediatric and adult providers. However, patients with special healthcare needs and their providers continue to face difficult decisional dilemmas due to the broad spectrum of the Six Core Elements coupled with questions regarding the best tools and approaches for implementing the elements. Furthermore, uncertainty exists regarding how the benefits and harms of approaches, as well as how the tools might be modified by patient characteristics (e.g., age, ethnicity, disease type), provider/hospital characteristics (e.g., access to specialty services, specialty training) and care setting (e.g., specialty center, telemedicine). Identifying and understanding intervention characteristics that lead to more successful transitions will help patients, caregivers, and providers make more informed decisions about what interventions (or components) may work for whom and under what circumstances.

There are not widely established neat packages of intervention components; they vary widely in their components, structure, and processes. We do not want to be overly prescriptive in defining or describing the potential array of interventions we might encounter in the literature. It is more effective at this point in time to approach it from the other side, noting that we are not explicitly excluding any intervention. Readers interested in more detail about potential interventions are encouraged to explore the GotTransitions website.

Key Decisional Dilemmas

The National Cancer Institute (NCI) requested this review as part of a series of projects for The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act to better understand the state of science and ultimately improve the care and quality of life for children and adolescent cancer survivors. As NCI anticipated limited research addressing transitions of care for children and youth with pediatric cancer, the review will focus more broadly on children with special health care needs transitioning to adult care. The key decisional dilemmas to be addressed by the review include the effectiveness and harms of (1) care interventions targeted toward children with special healthcare needs and their families/caregivers (2) provider-focused training and implementation strategies and (3) tools to facilitate communication between pediatric and adult providers.

Draft Questions, PICOTS, and Analytic Framework

Draft Key Questions

The draft key questions (KQ) address the effects of interventions for transition from pediatric to adult services for children with special healthcare needs. Because transition interventions can be complex, or multicomponent, and involve behavior changes on the part of patients and care providers, we include a sub-question to help understand barriers and facilitators for such interventions. The contextual questions will support and inform the review by providing information on the context within which transitions of care happen.

  • KQ1: What are the effectiveness, comparative effectiveness, and/or harms of care interventions for transition from pediatric to adult medical care services, including primary care, for children with special healthcare needs and their families/caregivers?
    • KQ1a: How do outcomes vary by intervention characteristics or components?
    • KQ1b: How do outcomes vary by patient/caregiver or provider characteristics or setting?
    • KQ1c: What are the barriers and facilitators to effective transitions?
    • KQ1d: What are the gaps in evidence for the effectiveness of the interventions?
  • KQ2: What are the effectiveness, comparative effectiveness, and/or harms of provider-related training and other implementation strategies for care transitions?
    • KQ2a: How do outcomes vary by intervention characteristics or components?
    • KQ2b: How do outcomes vary by patient/caregiver or provider characteristics or setting?
    • KQ2c: What are the barriers and facilitators to effective implementation?
    • KQ2d: What are the gaps in evidence for the effectiveness of the interventions?
  • KQ3: What is the effectiveness, comparative effectiveness, and/or harms of tools to facilitate communication between pediatric and adult providers for care transitions from pediatric to adult medical care for children with special healthcare needs and their families/caregivers?
    • KQ3a: How do outcomes vary by intervention characteristics or components?
    • KQ3b: How do outcomes vary by patient/caregiver or provider characteristics or setting?
    • KQ3c: What are the barriers and facilitators to effective tools to facilitate communication?
    • KQ3d: What are the gaps in evidence for the effectiveness of the interventions?

Table 1 provides specific detail for the KQ populations, interventions, comparators, outcomes, timing, and settings (PICOTS). Following that, Figure 1 shows a visual representation of the analytic framework for the KQ.

Table 1. Draft PICOTS

PICOT KQ1: Benefits and Harms of Care Intervention KQ2: Implementation Strategies KQ3: Communication Tools
Population

Adolescents and young adults (diagnosed with cancer or other special healthcare condition before 21 years old) with a chronic physical or mental illness or physical, intellectual, or developmental disability, also including parents and/or care givers.

Patient subgroups: disease condition (including cancer), age of diagnosis, sex/sexual orientation, race/ethnicity, religion, socioeconomic status, adverse childhood events

Provider subgroups: age, sex, race/ethnicity, education, socioeconomic status, specialty, care setting

Multi-disciplinary care providers (e.g. primary care/ family medicine physicians, specialty care physicians, nurse practitioners, physician assistant, etc.) caring for adolescents and young adults with a special healthcare need

Patient subgroups: disease condition (including cancer), age of diagnosis, sex/sexual orientation, race/ethnicity, religion, socioeconomic status, adverse childhood events

Provider subgroups: age, sex, race/ethnicity, education, socioeconomic status, specialty, care setting

Multi-disciplinary care providers (e.g. primary care/family medicine physicians, specialty care physicians, nurse practitioners, physician assistant, etc.) providers caring for adolescents and young adults with a special need

Patient subgroups: disease condition (including cancer), age of diagnosis, sex/sexual orientation, race/ethnicity, religion, socioeconomic status, adverse childhood events

Provider subgroups: age, sex, race/ethnicity, education, socioeconomic status, specialty, care setting

Intervention Intervention related to the care transition from pediatric to adult medical care (e.g., any single or multi-component intervention that addresses the Six Core Elements of healthcare transition such as educational materials, patient care documents, processes, etc. There are not widely established neat packages of intervention components; interventions vary widely in their components, structure, and processes. No intervention is explicitly excluded.)

Implementation strategies, including training (e.g., any single or multi-component intervention that addresses implementing the Six Core Elements of healthcare transition such as trainings)

Tools for provider communication (e.g., any single or multi-component intervention that addresses communication that supports the Six Core Elements of healthcare transition such as patient care documents)
Comparators Comparator required, but no exclusion based on comparator type Comparator required, but no exclusion based on comparator type Comparator required, but no exclusion based on comparator type
Outcomes
  • Cost
  • Resource utilization (ER visit, hospitalization, length of stay)
  • Mortality
  • Morbidity
  • Disease-specific clinical outcomes
  • Treatment or care adherence
  • Engagement in care (e.g., no shows, time between providers, satisfaction, loss to follow-up, time between leaving pediatric setting to going to adult)
  • Satisfaction (patient and family)
  • Transition readiness (e.g., patient, family, provider, and system level)
  • Quality of life
  • Family Caregiver outcomes
  • Harms
  • Unintended consequences (e.g., ethics of transition)
  • Psychosocial (e.g., social-emotional, mental health etc.)
  • Insurance
  • Wellness visits/screenings (e.g., depression, anxiety, STIs, other risk and resiliency factors such as alcohol use, substance abuse, violence)
  • Cost of implementation
  • Adoption
  • Fidelity
  • Sustainability
  • Feasibility
  • Acceptability
  • Satisfaction (physician and other formal caregiver)
  • Quality of life
  • Family Caregiver outcomes
  • Mortality
  • Morbidity
  • Disease-specific clinical outcomes
  • Harms
  • Unintended consequences (e.g., ethics of transition)
  • Insurance
  • Cost
  • Resource utilization (ER visit, hospitalization, length of stay)
  • Mortality
  • Morbidity
  • Disease-specific clinical outcomes
  • Treatment or care adherence
  • Engagement in care (e.g., no shows, time between providers, satisfaction, loss to follow-up, time between leaving pediatric setting to going to adult)
  • Satisfaction (patient and family)
  • Transition readiness
  • Quality of life
  • Family Caregiver outcomes
  • Harms
  • Unintended consequences (e.g., ethics of transition)
  • Insurance
Setting All Settings (e.g., primary care, specialty care, schools, rural, resource limited settings, and telehealth) All Settings (e.g., primary care, specialty care, schools, rural, resource limited settings, and telehealth) All Settings (e.g., primary care, specialty care, schools, rural, resource limited settings, and telehealth)

Abbreviations: ER=Emergency room visit; PICOT=population, intervention, comparator, outcome, timing, setting

 

Figure 1. Draft Analytic Framework

imary care. Primary care may include instances where the patients remain with their Family Practice or Medical/Pediatric physician or care teams under newly established roles/relationships as adult patients. Three arrows pointing from cancer patients suggest they may also transition to primary care, cancer specialty care or survivorship models of care.

 

Draft Contextual Questions

In addition to the identified key questions, NCI expressed interest in a formal, mixed-methods evaluation of the context in which interventions for transitioning children with special healthcare needs from pediatric to adult services are developed and utilized. Questions to be evaluated include:

  1. How is effectiveness defined and measured for transitions of care from pediatric to adult services for children with special healthcare needs?
  2. What transition care training and other implementation strategies are available to prepare pediatric medical providers (e.g., pediatricians and other specialists) and adult medical providers (e.g., primary care providers, nurse practitioners, physician assistants) for transitioning children with special healthcare needs to adult care?
  3. What training is available for linguistic- and culturally competent care?
  4. What transition care training and other implementation strategies are available to prepare pediatric patients and their families for transitioning children with special healthcare needs to adult care?
  5. What care interventions including primary care have been used for transition from pediatric to adult medical care for children with special healthcare needs?
  6. What strategies have been proposed to increase availability of adult care providers for people transitioning from pediatric to adult care?

References

  1. Children with Special Health Care Needs. 2020. (Accessed April 21, 2020).
  2. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998;102:137-40.
  3. McManus MA, Pollack LR, Cooley WC, et al. Current Status of Transition Preparation Among Youth With Special Needs in the United States. Pediatrics 2013;131:1090-7.
  4. Sadak KT, Dinofia A, Reaman G. Patient-perceived facilitators in the transition of care for young adult survivors of childhood cancer. Pediatric blood & cancer 2013;60:1365-8.
  5. Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. Health care transition for youth with special health care needs. The Journal of adolescent health : official publication of the Society for Adolescent Medicine 2012;51:213-9.
  6. Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics 2011;128:182-200.
  7. Got Transitions. 2020 (Accessed July 29, 2020).