BACKGROUND AND OBJECTIVES:

The transition from pediatric to adult health care is a vulnerable period for youth with special health care needs. Although successful transitions are recognized as critical for improving adult outcomes and reducing health care utilization and cost, an educational gap in health care transitions for physicians persists. Our aim with this project was to develop a national health care transition residency curriculum for primary care physicians, using an expert-based, consensus-building process.

METHODS:

Medical professionals with expertise in health care transition were recruited to participate in a survey to assist in the development of a health care transition curriculum for primary care physicians. By using a modified Delphi process, curricular goals and objectives were drafted, and participants rated the importance of each objective, feasibility of developing activities for objectives, and appropriateness of objectives for specified learners. Mean and SDs for each response and percent rating for the appropriateness of each objective were calculated.

RESULTS:

Fifty-six of 246 possible respondents participated in round 1 of ratings and 36 (64%) participated in the second round. Five goals with 32 associated objectives were identified. Twenty-five of the 32 objectives (78%) were rated as being appropriate for “proficient” learners, with 7 objectives rated as “expert.” Three objectives were added to map onto the Got Transition guidelines.

CONCLUSIONS:

The identified goals and objectives provide the foundation and structure for future curriculum development, facilitating the sharing of curricular activities and evaluation tools across programs by faculty with a range of expertise.

As more children enter adulthood with chronic and complex conditions, assuring safe handoffs into the adult health care system is of growing importance. Poor transitions can lead to youth receiving inappropriate medical care or dropping out of care entirely, with resulting increases in morbidity and mortality.1,4 Inadequate information transfer during transition may result in an increase in health care use through repeat or unnecessary testing and ineffective treatments. Furthermore, the transition to adulthood can be an emotionally difficult time as youth and their families face the challenges of leaving trusted medical professionals and navigating complex and unfamiliar adult health care system without guidance.5 Therefore, age-related health care transitions (health care transitions) represent another focus for the Triple Aim in health care: an opportunity to improve health outcomes, decrease costs, and improve patient experience.6,7 

As transitioning to adult care for youth with chronic conditions is a complex process. Assuring high-quality health care transitions requires prepared, knowledgeable health care providers on both the pediatric and adult sides of the transition.8,9 Multiple studies indicate that only a small proportion of youth with special health care needs (YSHCN) are receiving transition preparation services, and both pediatric and adult providers feel unprepared to address transition issues with their patients.3,10 The lack of knowledge and experience for health care providers in this area reflects a large gap in professional education.11 Primary care residency programs train physicians who will be on the front lines assisting YSHCN during this critical developmental period. Although a handful of training programs have attempted to address this need, no formal guidelines exist for how to best train future physicians in supporting YSHCN and their families through this vulnerable life stage.11,12 

Our aim with this project was to develop a national health care transition residency curriculum for physicians, using an expert-based consensus-building process to address the first phase of residency curricular development: identifying goals and objectives.

Study participants included individuals with expertise in health care transition for YSHCN and residency teaching from 3 identified groups: (1) 101 attendees at the Health Care Transition Research Consortium (HCTRC), an international group of multidisciplinary health care providers and advocates interested in improving health care transitions; (2) 130 members from the Medicine-Pediatrics Program Directors Association (MPPDA); and (3) 15 members from the Society for General Internal Medicine’s Task Force on Adults with Chronic Conditions Originating in Childhood. Survey responses were solicited via e-mails to the groups’ listservs and through presentations at each group’s annual meetings (held between October 2013 and May 2014). Study procedures were approved by the Human Research Protection Office at the University of California, Los Angeles. Informed consent was waived for all participants.

In this study, we used a modified Delphi model to elicit expert input over 5 phases; this method of iterative sampling allows anonymity, provides experts with feedback on how others rated the same items, and has been used in other expert consensus projects.13,15 

In phase 1, a preliminary set of health care transition curricular goals and objectives were drafted on the basis of a literature review and curricula gathered from residency programs across the country.

During phase 2, respondents completed an online or paper-based survey on the importance of each identified objective and the feasibility of developing teaching activities for each objective. Importance and ease of teaching were rated by using a 5-point Likert scale (ie, 1 = “Not at All Important/Easy” to 5 = “Extremely Important/Easy”). Participants could either respond anonymously or self-identify.

In phase 3, the results were analyzed and average scores with SDs were calculated. The results were discussed and feedback elicited at the annual meetings of the health care transition Special Interest Group (with many of the HCTRC members present) and the MPPDA.

During phase 4, the same expert groups received e-mail invitations to participate in the survey; individuals could respond regardless of previous participation. Participants were given the mean “importance” rating and SD for each objective from phase 2 and asked to label each objective as appropriate for learners with either an expected “proficient” or “expert” level of knowledge and skill in health care transition. Open-ended comments were also solicited.

Phase 5 consisted of a calculation of the percent rating as appropriate for a “proficient” level of performance and review of comments. Additional objectives were developed outside of the Delphi process to coordinate this curricular framework with the national Got Transition practice guidelines.

Fifty-six of 246 (23%) possible respondents participated in phase 2. Eighty percent (n = 45) of respondents had a role as an educator in a clinical residency program, with an average of 7.9 years’ experience. Thirty-six individuals participated in phase 4, of whom 10 (28%) had also participated in the previous round.

Five goals with 32 associated objectives were identified for the preliminary curriculum. These goals described that learners should (1) understand the transition from pediatric to adult health care (8 objectives), (2) understand insurance policies and social services (4 objectives), (3) consider developmental and psychosocial needs (12 objectives), (4) address educational and vocational needs (4 objectives), and (5) improve health care systems for YSHCN (4 objectives).

The majority of the 32 objectives were rated as “Very Important or Very Easy” or “Extremely Important or Extremely Easy” (Table 1). Exceptions included goal 1 to 8 regarding coding and billing practices, goal 3 to 4 on identifying community resources, and goal 4 to 4 on formulating vocational goals for YSHCN. Overall, the “ease” of teaching these objectives was rated relatively low. Exceptions included understanding common chronic diseases of childhood onset and being familiar with national consensus guidelines for transition care. No additional objectives were suggested.

TABLE 1

Ratings of Respondents From Phase 2 and Phase 4

Mean (SD)% Rated Very (4) or Extremely (5) Important to Training% Rated Very (4) or Extremely (5) Easy to Identify Activities% Rated Proficient
A. Residents Should Be Able to Demonstrate Knowledge and Skills of the Issues Around the Transition From Pediatric to Adult Care for YSHCN     
 1. Understand the differences between adult and pediatric care, including cultural and practice differences, systems of support offered to patients and families, differences in care delivery, and how that affects the clinicians’ relationship with the patient and their family 3.55 (0.62) 93 34 94 
 2. Understand the elements of transition preparation, including key elements of patient, family, and clinician preparation, as well as timing of transition preparation in the scope of adolescent and young adult practice 3.82 (0.43) 98 34 92 
 3. Understand common chronic diseases of childhood onset 3.42 (0.73) 89 54 89 
 4. Perform a complete history and physical in a YYA with physical disabilities and/or intellectual disabilities 3.51 (0.60) 93 49 86 
 5. Communicate and coordinate effectively around handoffs in care transition between pediatric and adult specialists and primary care providers, multidisciplinary care team members, as well as with patients and families 3.69 (0.50) 96 13 75 
 6. Demonstrate the ability to work as an effective member of an interprofessional team to support youth with health care transition 3.48 (0.65) 91 25 72 
 7. Develop and update transition plan of care, addressing decision-making status and self-management 3.34 (0.66) 89 23 72 
 8. Apply effective coding and billing practice for transition care 2.65 (0.97) 47 19 50 
B. Residents should understand the development and psychosocial aspects of transitioning to adulthood for YSHCN     
 1. Describe developmental considerations in typical adolescence and emerging adulthood, and the delivery of developmentally appropriate care 3.55 (0.60) 95 39 81 
 2. Recognize the diversity of YYA and families with regards to sociocultural factors (eg, culture, race, ethnicity, religion, sex, sexual orientation, disabilities, and socioeconomic status) and how differences in beliefs, practices, and backgrounds may impact patient care and family dynamics 3.15 (0.80) 78 20 81 
 3. Identify and address the mental health needs in YYA with special health care needs 3.58 (0.53) 98 81 
 4. Describe the impact of having a special health care need on development 3.24 (0.74) 81 28 78 
 5. Identify and manage reproductive and sexual health issues in YYA with special health care needs 3.36 (0.58) 95 24 78 
 6. Demonstrate the ability to provide effective counseling to increase adherence to medical recommendations for YYA and their families 3.43 (0.71) 91 24 75 
 7. Understand the challenges of parenting a YYA and evolving parenting roles in health care decision-making and chronic disease management 3.17 (0.72) 80 17 69 
 8. Recognize issues related to caregivers for YYA with intensive home care needs 3.07 (0.66) 81 15 69 
 9. Partner with YYA and families to develop self-care skills in a developmentally appropriate manner 3.31 (0.81) 85 15 69 
 10. Demonstrate the ability to perform and document a psychosocial assessment of a YYA, with consideration of confidentiality issues 3.35 (0.74) 84 37 67 
 11. Collaborate with YYA and families to develop advance care plans when appropriate, including advance directives and identifying goals of care 3.36 (0.70) 87 19 58 
 12. Understand the medical-legal and financial aspects of care for YA with developmental disabilities (eg, guardianship and conservatorship) 3.04 (0.95) 76 26 56 
C. Residents should understand how YSHCN and their families are impacted by insurance policies and social services as they age from childhood to adulthood     
 1. Identify key resources for patients and families in the home environment including home care services and durable medical equipment 2.50 (0.87) 70 14 56 
 2. Understand insurance types and eligibility and how changes to insurance status and availability across the pediatric to adult transition impact access to care 2.75 (0.87) 70 23 44 
 3. Identify government income support programs at the local, state, and national level for YYA with special health care needs 2.50 (0.92) 52 23 25 
 4. Identify available community resources for housing and residential services for YYA with developmental disabilities 2.25 (0.99) 45 13 25 
D. Residents should understand and address the educational and vocational needs of YYA with special health care needs     
 1. Understand the rights granted under the Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act 2.89 (0.81) 75 35 83 
 2. Collaborate with youth and families to help them access the educational resources needed to maximize educational attainment, including requesting school accommodations and participating in Individualized Education Plans 2.87 (0.90) 69 17 64 
 3. Identify community-based, state, and federal resources for children and adults with developmental disabilities 2.84 (0.95) 65 22 36 
 4. Formulate vocational goals with youth and families, helping them to identify vocational rehabilitation services and programs, employment opportunities and needed job accommodations 2.71 (1.04) 58 19 31 
E. Residents will be able to apply knowledge of health care systems to their practice environment and beyond to improve patient care and policies for YYA with special health care needs     
 1. Identify and implement appropriate transition-related policies 2.92 (0.91) 71 06 39 
 2. Demonstrate the ability to advocate for the needs of YYA with special health care needs 3.13 (0.84) 76 31 72 
 3. Enter transition youth into a registry and track their progress 2.96 (0.96) 67 13 33 
Mean (SD)% Rated Very (4) or Extremely (5) Important to Training% Rated Very (4) or Extremely (5) Easy to Identify Activities% Rated Proficient
A. Residents Should Be Able to Demonstrate Knowledge and Skills of the Issues Around the Transition From Pediatric to Adult Care for YSHCN     
 1. Understand the differences between adult and pediatric care, including cultural and practice differences, systems of support offered to patients and families, differences in care delivery, and how that affects the clinicians’ relationship with the patient and their family 3.55 (0.62) 93 34 94 
 2. Understand the elements of transition preparation, including key elements of patient, family, and clinician preparation, as well as timing of transition preparation in the scope of adolescent and young adult practice 3.82 (0.43) 98 34 92 
 3. Understand common chronic diseases of childhood onset 3.42 (0.73) 89 54 89 
 4. Perform a complete history and physical in a YYA with physical disabilities and/or intellectual disabilities 3.51 (0.60) 93 49 86 
 5. Communicate and coordinate effectively around handoffs in care transition between pediatric and adult specialists and primary care providers, multidisciplinary care team members, as well as with patients and families 3.69 (0.50) 96 13 75 
 6. Demonstrate the ability to work as an effective member of an interprofessional team to support youth with health care transition 3.48 (0.65) 91 25 72 
 7. Develop and update transition plan of care, addressing decision-making status and self-management 3.34 (0.66) 89 23 72 
 8. Apply effective coding and billing practice for transition care 2.65 (0.97) 47 19 50 
B. Residents should understand the development and psychosocial aspects of transitioning to adulthood for YSHCN     
 1. Describe developmental considerations in typical adolescence and emerging adulthood, and the delivery of developmentally appropriate care 3.55 (0.60) 95 39 81 
 2. Recognize the diversity of YYA and families with regards to sociocultural factors (eg, culture, race, ethnicity, religion, sex, sexual orientation, disabilities, and socioeconomic status) and how differences in beliefs, practices, and backgrounds may impact patient care and family dynamics 3.15 (0.80) 78 20 81 
 3. Identify and address the mental health needs in YYA with special health care needs 3.58 (0.53) 98 81 
 4. Describe the impact of having a special health care need on development 3.24 (0.74) 81 28 78 
 5. Identify and manage reproductive and sexual health issues in YYA with special health care needs 3.36 (0.58) 95 24 78 
 6. Demonstrate the ability to provide effective counseling to increase adherence to medical recommendations for YYA and their families 3.43 (0.71) 91 24 75 
 7. Understand the challenges of parenting a YYA and evolving parenting roles in health care decision-making and chronic disease management 3.17 (0.72) 80 17 69 
 8. Recognize issues related to caregivers for YYA with intensive home care needs 3.07 (0.66) 81 15 69 
 9. Partner with YYA and families to develop self-care skills in a developmentally appropriate manner 3.31 (0.81) 85 15 69 
 10. Demonstrate the ability to perform and document a psychosocial assessment of a YYA, with consideration of confidentiality issues 3.35 (0.74) 84 37 67 
 11. Collaborate with YYA and families to develop advance care plans when appropriate, including advance directives and identifying goals of care 3.36 (0.70) 87 19 58 
 12. Understand the medical-legal and financial aspects of care for YA with developmental disabilities (eg, guardianship and conservatorship) 3.04 (0.95) 76 26 56 
C. Residents should understand how YSHCN and their families are impacted by insurance policies and social services as they age from childhood to adulthood     
 1. Identify key resources for patients and families in the home environment including home care services and durable medical equipment 2.50 (0.87) 70 14 56 
 2. Understand insurance types and eligibility and how changes to insurance status and availability across the pediatric to adult transition impact access to care 2.75 (0.87) 70 23 44 
 3. Identify government income support programs at the local, state, and national level for YYA with special health care needs 2.50 (0.92) 52 23 25 
 4. Identify available community resources for housing and residential services for YYA with developmental disabilities 2.25 (0.99) 45 13 25 
D. Residents should understand and address the educational and vocational needs of YYA with special health care needs     
 1. Understand the rights granted under the Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act 2.89 (0.81) 75 35 83 
 2. Collaborate with youth and families to help them access the educational resources needed to maximize educational attainment, including requesting school accommodations and participating in Individualized Education Plans 2.87 (0.90) 69 17 64 
 3. Identify community-based, state, and federal resources for children and adults with developmental disabilities 2.84 (0.95) 65 22 36 
 4. Formulate vocational goals with youth and families, helping them to identify vocational rehabilitation services and programs, employment opportunities and needed job accommodations 2.71 (1.04) 58 19 31 
E. Residents will be able to apply knowledge of health care systems to their practice environment and beyond to improve patient care and policies for YYA with special health care needs     
 1. Identify and implement appropriate transition-related policies 2.92 (0.91) 71 06 39 
 2. Demonstrate the ability to advocate for the needs of YYA with special health care needs 3.13 (0.84) 76 31 72 
 3. Enter transition youth into a registry and track their progress 2.96 (0.96) 67 13 33 

YYA, youth or young adult.

In open-ended comments, respondents noted that the feasibility of teaching these objectives was dependent on faculty expertise and clinical resources, both of which were limited at their programs. A few respondents also questioned whether social service knowledge should be part of residency curricula.

Results from this first round of ratings were discussed at the MPPDA (April 2014) and HCTRC (May 2014) meetings. In discussions of whether physicians needed to know about social support and services, the consensus was that physicians, in fact, do need a sufficient level of expertise to guide patients and families beyond “calling social work,” particularly because many physicians practice in settings without the support of social workers or care coordinators.

In this second round of ratings, 25 of the 32 objectives (78%) were rated by the majority of respondents as appropriate for learners with a “proficient” level of expertise (Table 1). Five of the 7 objectives (71%) rated by the majority as appropriate for expert-level learners addressed nonmedical resources for youth or young adults with developmental delay and/or medical disabilities. In written comments, respondents noted that the same objectives might be addressed with both beginner and advanced learners, with greater depth of coverage for the latter group.

Three objectives were developed to map onto the national Got Transition 6 Core Elements practice guidelines (Table 2). Objectives added to correspond with these core elements include the following: (E4) on creating readiness assessments, (E5) on eliciting feedback on the transfer process, and (E6) on utilizing a transfer package.

TABLE 2

Transition Goals and Objectives Mapped to Got Transition’s Core Elements and Medicine and Pediatrics Residency Milestones

Core ElementMilestone
A. Residents Should Be Able to Demonstrate Knowledge and Skills of the Issues Around the Transition From Pediatric to Adult Care for YSHCN   
 1. Understand the differences between adult and pediatric care, including cultural and practice differences, systems of support offered to patients and families, differences in care delivery, and how that affects the clinicians’ relationship with the patient and their family — P-SBP1 
 2. Understand the elements of transition preparation, including key elements of patient, family, and clinician preparation, as well as timing of transition preparation in the scope of adolescent and young adult practice 3 readiness M- SBP4, P-PC3 
 3. Understand common chronic diseases of childhood onseta — M-MK1 
 4. Perform a complete history and physical in a YYA with physical disabilities and/or intellectual disabilitiesa — M-PC1, P-PC1 
 5. Communicate and coordinate effectively around handoffs in care transition between pediatric and adult specialists and primary care providers, multidisciplinary care team members, as well as with patients and families 5 transfer M -SBP4, P-PC3 
 6. Demonstrate the ability to work as an effective member of an interprofessional team to support youth with health care transitions 4 plan M-SBP1, ICS2 
P-SBP3 
 7. Develop and update transition plan of care, addressing decision-making status and self-management 4 plan M-PC2, P-PC5 
 8. Apply effective coding and billing practice for transition care 5 transfer M-SBP3 
 9. (expert) Use a transfer package, including readiness assessment, plan of, medical summary and emergency care plan, and, if needed, legal documents, condition fact sheet, and additional provider records 5 transfer M-SBP3 
B. Residents should understand the development and psychosocial aspects of transitioning to adulthood for YSHCN   
 1. Describe developmental considerations in typical adolescence and emerging adulthood, and the delivery of developmentally appropriate care 3 readiness P-ICS2 
 2. Recognize the diversity of YYA and families with regards to sociocultural factors (eg, culture, race, ethnicity, religion, sex, sexual orientations, disabilities, and socioeconomic status) and how difference in beliefs, practices, and backgrounds may impact patient care and family dynamicsa — M-PROF3, ICS1 
P-ICS1 
 3. Identify and address the mental health needs in YYA with special health care needs 4 plan P-ICS2 
 4. Describe the impact of having a special health care need on development 3 readiness M-MK1 
 5. Identify and manage reproductive and sexual health issues in YYA with special health care needs 4 plan P-PC4 
 6. Demonstrate the ability to provide effective counseling to increase adherence to medical recommendations for YYA and their families 3 readiness M-PROF3, ICS1, 
P-ICS1 
 7. Understand the challenges of parenting a YYA and evolving parenting roles in health care decision-making and chronic disease management 1 policy M-PROF1, P-PROF1 
 8. Recognize issues related to caregivers for YYA with intensive home care needsa — P-SBP1 
 9. Partner with YYA and families to develop self-care skills in a developmentally appropriate manner 3 readiness M-PROF1 
P-PROF1 
 10. Demonstrate the ability to perform and document a psychosocial assessment of a YYA with consideration of confidentiality issues 1 policy M-PC1 
P-PC1 
 11. Collaborate with YYA and families to develop advance care plans when appropriate, including advance directives and identifying goals of care 4 plan M-PROF1 
P-PROF1 
 12. Understand the medical-legal and financial aspects of care for YA with developmental disabilities (eg, guardianship and conservatorship) 4 plan M-SBP1, ICS2 
P-SBP3 
C. Residents should understand how YSHCN and their families are impacted by insurance policies and social services as they age from childhood to adulthood   
 1. Identify key resources for patients and families in the home environment including home care services and durable medical equipmenta — M-PC2 
P-PC5 
 2. (expert) Understand insurance types and eligibility and how changes to insurance status and availability across the pediatric to adult transition impacts access to care 4 plan M-SBP3 
 3. (expect) Identify government income support programs at the local, state and national level for YYA with special health care needsa — M-SBP3 
 4. (expert) Identify available community resources for housing and residential services for YYA with developmental disabilitiesa — M-SBP4 
P-PC3 
D. Residents should understand and address the educational and vocational needs of YYA with special health care needs   
 1. Understand the rights granted under the Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Acta — P-PROF2 
 2. Collaborate with youth and families to help them access the education resources needed to maximize educational attainment, including requesting school accommodations and participating in Individualized Education Plana — P-PROF2 
 3. (expert) Identify community-based, state, and federal resources for children and adults with developmental disabilitiesa — P-PROF2 
 4. (expert) Formulate vocational goals with youth and families helping them to identify vocational rehabilitation services and programs, employment opportunities, and needed job accommodationsa — P-PROF2 
E. Residents will be able to apply knowledge of health care systems to their practice environment and beyond to improve patient care and policies for YYA with special health care needs   
 1. Identify and implement appropriate transition-related policies 1 policy P-MK1 
 2. Demonstrate the ability to advocate for the needs of YYA with special health care needs 6 completion M-SBP2 
P-SBP2 
 3. (expert) Enter transitioning youth into a registry and track their progress 2 registry P-PROF2 
 4. (expert) Conduct regular transition readiness assessments and create prioritized actions for youth development. (added) 3 readiness M-SBP2 
P-SBP2 
 5. (expert) Elicit feedback about transfer process from youth and providers, cultivating collaborative partnerships. (added) 6 completion M-SBP2 
P-SBP2 
 6. (expert) Use a transfer package, including readiness assessment, plan of care, medical summary, and emergency care plan, and, if necessary, legal documents, condition fact sheet, and additional provider records. (added) 3 readiness M-SBP1, ICS2 
4 plan P-SBP3 
5 transfer 
Core ElementMilestone
A. Residents Should Be Able to Demonstrate Knowledge and Skills of the Issues Around the Transition From Pediatric to Adult Care for YSHCN   
 1. Understand the differences between adult and pediatric care, including cultural and practice differences, systems of support offered to patients and families, differences in care delivery, and how that affects the clinicians’ relationship with the patient and their family — P-SBP1 
 2. Understand the elements of transition preparation, including key elements of patient, family, and clinician preparation, as well as timing of transition preparation in the scope of adolescent and young adult practice 3 readiness M- SBP4, P-PC3 
 3. Understand common chronic diseases of childhood onseta — M-MK1 
 4. Perform a complete history and physical in a YYA with physical disabilities and/or intellectual disabilitiesa — M-PC1, P-PC1 
 5. Communicate and coordinate effectively around handoffs in care transition between pediatric and adult specialists and primary care providers, multidisciplinary care team members, as well as with patients and families 5 transfer M -SBP4, P-PC3 
 6. Demonstrate the ability to work as an effective member of an interprofessional team to support youth with health care transitions 4 plan M-SBP1, ICS2 
P-SBP3 
 7. Develop and update transition plan of care, addressing decision-making status and self-management 4 plan M-PC2, P-PC5 
 8. Apply effective coding and billing practice for transition care 5 transfer M-SBP3 
 9. (expert) Use a transfer package, including readiness assessment, plan of, medical summary and emergency care plan, and, if needed, legal documents, condition fact sheet, and additional provider records 5 transfer M-SBP3 
B. Residents should understand the development and psychosocial aspects of transitioning to adulthood for YSHCN   
 1. Describe developmental considerations in typical adolescence and emerging adulthood, and the delivery of developmentally appropriate care 3 readiness P-ICS2 
 2. Recognize the diversity of YYA and families with regards to sociocultural factors (eg, culture, race, ethnicity, religion, sex, sexual orientations, disabilities, and socioeconomic status) and how difference in beliefs, practices, and backgrounds may impact patient care and family dynamicsa — M-PROF3, ICS1 
P-ICS1 
 3. Identify and address the mental health needs in YYA with special health care needs 4 plan P-ICS2 
 4. Describe the impact of having a special health care need on development 3 readiness M-MK1 
 5. Identify and manage reproductive and sexual health issues in YYA with special health care needs 4 plan P-PC4 
 6. Demonstrate the ability to provide effective counseling to increase adherence to medical recommendations for YYA and their families 3 readiness M-PROF3, ICS1, 
P-ICS1 
 7. Understand the challenges of parenting a YYA and evolving parenting roles in health care decision-making and chronic disease management 1 policy M-PROF1, P-PROF1 
 8. Recognize issues related to caregivers for YYA with intensive home care needsa — P-SBP1 
 9. Partner with YYA and families to develop self-care skills in a developmentally appropriate manner 3 readiness M-PROF1 
P-PROF1 
 10. Demonstrate the ability to perform and document a psychosocial assessment of a YYA with consideration of confidentiality issues 1 policy M-PC1 
P-PC1 
 11. Collaborate with YYA and families to develop advance care plans when appropriate, including advance directives and identifying goals of care 4 plan M-PROF1 
P-PROF1 
 12. Understand the medical-legal and financial aspects of care for YA with developmental disabilities (eg, guardianship and conservatorship) 4 plan M-SBP1, ICS2 
P-SBP3 
C. Residents should understand how YSHCN and their families are impacted by insurance policies and social services as they age from childhood to adulthood   
 1. Identify key resources for patients and families in the home environment including home care services and durable medical equipmenta — M-PC2 
P-PC5 
 2. (expert) Understand insurance types and eligibility and how changes to insurance status and availability across the pediatric to adult transition impacts access to care 4 plan M-SBP3 
 3. (expect) Identify government income support programs at the local, state and national level for YYA with special health care needsa — M-SBP3 
 4. (expert) Identify available community resources for housing and residential services for YYA with developmental disabilitiesa — M-SBP4 
P-PC3 
D. Residents should understand and address the educational and vocational needs of YYA with special health care needs   
 1. Understand the rights granted under the Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Acta — P-PROF2 
 2. Collaborate with youth and families to help them access the education resources needed to maximize educational attainment, including requesting school accommodations and participating in Individualized Education Plana — P-PROF2 
 3. (expert) Identify community-based, state, and federal resources for children and adults with developmental disabilitiesa — P-PROF2 
 4. (expert) Formulate vocational goals with youth and families helping them to identify vocational rehabilitation services and programs, employment opportunities, and needed job accommodationsa — P-PROF2 
E. Residents will be able to apply knowledge of health care systems to their practice environment and beyond to improve patient care and policies for YYA with special health care needs   
 1. Identify and implement appropriate transition-related policies 1 policy P-MK1 
 2. Demonstrate the ability to advocate for the needs of YYA with special health care needs 6 completion M-SBP2 
P-SBP2 
 3. (expert) Enter transitioning youth into a registry and track their progress 2 registry P-PROF2 
 4. (expert) Conduct regular transition readiness assessments and create prioritized actions for youth development. (added) 3 readiness M-SBP2 
P-SBP2 
 5. (expert) Elicit feedback about transfer process from youth and providers, cultivating collaborative partnerships. (added) 6 completion M-SBP2 
P-SBP2 
 6. (expert) Use a transfer package, including readiness assessment, plan of care, medical summary, and emergency care plan, and, if necessary, legal documents, condition fact sheet, and additional provider records. (added) 3 readiness M-SBP1, ICS2 
4 plan P-SBP3 
5 transfer 

All objectives are mapped to a Medicine (M) and/or Pediatrics (P) milestone. Competency domains include: ICS, Interpersonal Skills and Communication; MK, Medical Knowledge; PC, Patient Care; PROF, Professionalism; SBP, Systems-based Practice competency domain. Other abbreviations/symbols used: YYA, youth or young adult; —, not applicable.

a

Objective refers to content oriented toward specific special care needs and do not map onto any one Core Element.

In this consensus project, we surveyed national thought leaders in providing high-quality health care transitions for YSHCN to identify curricular goals and objectives for a national health care transition residency curriculum for physicians. Independent participant ratings assured that responses were not overly influenced by any 1 voice or group. A few items were perceived as less important for a general level of proficiency among physicians, especially objectives related to insurance and community-based social services outside of the medical system. However, in follow-up discussions with participants about these items, it was emphasized that these issues were important for practice but perhaps beyond the purview of a residency curriculum.

Two themes emerged from the comments and discussions on this consensus project. A few raters felt that some of the objectives regarding social services addressed concerns that were outside of the scope of knowledge to be expected of physicians. This was also reflected in the finding that 5 of the 7 objectives rated as “expert” level addressed social services outside of the health care sector. However, further in-person discussions indicated consensus that a broad biopsychosocial approach is appropriate for physicians addressing health care transitions, acknowledging that physicians would ideally work as part of multidisciplinary teams, although social work or mental health providers may not be available at times. A related tension for those approaching health care transition from a primary care, as opposed to a subspecialty, standpoint is that many of the transition-related needs of youth with cognitive impairment (versus those with medical complexity only) involve social service sectors traditionally outside of the purview of adult medical care but commonly addressed by pediatric health care providers (eg, developmental services or the K-12 school system).

In addition, our experts noted that certain topics and learning activities would need to be tailored toward specific learners (eg, pediatrics versus internal medicine); thus, a range of activities tailored toward different learners should be disseminated. For example, internal medicine residents are frequently less familiar with certain diagnoses such as inborn errors of metabolism, whereas pediatric residents will have had exposure to these. Likewise, pediatric residents may not be familiar with work-related disability policies or Medicare eligibility.

Although there was broad consensus on the key goals and objectives for a health care transition curriculum, we found that identifying learning activities that would meet these objectives were challenging for the majority of the faculty surveyed, as evidenced by the low ratings for the “ease” of teaching these objectives and comments regarding limited faculty experience and expertise in these areas. Because there are relatively few primary care–based programs offering transition-related services, there is a lack of provider experience.12,16 This lack of capacity to teach is especially concerning for the objectives rated “extremely/very important” and are also considered appropriate for a proficient-level learner (Table 2). Given this, it is clear that primary care faculty from both categorical and combined medicine-pediatrics programs will need support in developing appropriate teaching and evaluation activities for these objectives. One way of addressing this challenge would be for providers to create learning collaboratives to develop and share tools and activities, using this consensus curriculum as a framework. Having a common framework facilitates sharing of ideas and also identifies best practices in providing health care transition support to youth and families. Furthermore, Entrustable Professional Activities and other evaluation tools could be developed and shared, defining various levels of expertise among learners.13,17,18 Categorical pediatrics and internal medicine programs in locations without combined medicine-pediatrics providers or other “champions” for health care transition will especially need guidance and resources to facilitate instruction for their trainees. Finally, other disciplines could also modify and adapt this set of goals and objectives to best suit the needs of learners in their own fields (eg, nursing, social work).

Study limitations include our inability to provide opportunities for more extensive discussion among all of the experts, despite some in-person discussion at various national meetings. Additionally, although a step forward, this effort does not address the development of all aspects of a complete curriculum, which would include both learning activities and evaluation tools. Although our response rate for the initial survey was 23%, our focus was on recruiting at least 50 national-level experts on health care transitions to achieve consensus among participants. Study strengths include the fact that we reached a large proportion of participants from across the country with expertise in health care transitions for youth, clinical care of this population, and/or residency education. Also, the iterative process used for this effort allowed experts to have input both into the content of the curriculum and also into the evaluation process itself.

In this article, we provide a framework with a common set of goals and objectives for addressing the scope of expected knowledge and skills for primary care residents as they provide care for patients during the transition to adulthood. This framework could be used as a foundation for future curriculum development, facilitating the sharing of curricular activities and evaluation tools across programs. Using these identified goals and objectives, faculty with a range of expertise can better develop activities for their residents, providing a common structure to support sharing teaching activities across programs. Furthermore, this model curriculum could be adapted both for specific types of trainees (adult versus pediatric focused) and to the availability of local teaching resources.

     
  • HCTRC

    Health Care Transition Research Consortium

  •  
  • MPPDA

    Medicine-Pediatrics Program Directors Association

  •  
  • YSHCN

    youth with special health care needs

Drs Kuo and Lotstein conceptualized and designed the study, oversaw and participated in data collection, helped to create the codebook for the qualitative analysis, and critically reviewed and revised the manuscript; Drs Ciccarelli and Sharma critically reviewed and revised the manuscript for intellectual content; and all authors approved the final manuscript as submitted.

FUNDING: Supported by the US Department of Health and Human Services, Health Resources and Services Administration (Life Course Health Development for Primary Care Residents [D58HP23228, principal investigator: Kuo] and Health Care Transitions Research Network for Youth and Young Adults with Autism Spectrum Disorders [UA3MC27364, principal investigator: Kuo]). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by the Health Resources and Services Administration, US Department of Health and Human Services, or US Government.

We acknowledge the dedicated members of the Health Care Transitions Research Consortium, the MPPDA’s Transition Committee, and the Society for General Internal Medicine’s Task Force on Adults with Chronic Conditions Originating in Childhood. We would also like to thank Tara Crapnell, OTD, OTR/L from the Maternal and Child Health Bureau’s Health Care Transitions Research Network for her assistance with the preparation of this article.

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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.