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October 2011
 

Spotlight on Child Health Issues:
Transitioning From a Pediatric to an Adult Medical Home

The National Center for Medical Home Implementation (NCMHI) is pleased to announce the new Spotlight on Child Health Issues series—periodic supplements to the monthly Medical Homes @ Work e-Newsletter. These Spotlight editions will provide timely information and practical medical home resources for providers, families, and states regarding popular child health topics. For this first edition, the focus will be on transition from pediatric to adult care, while future editions will highlight the importance of health information technology, mental health, and oral health within the medical home.

We hope you enjoy the new Spotlight series as you continue the important work of ensuring that every child and youth has access to a medical home

INTRODUCTION

Change is inevitable yet it can be daunting when there are too many unknowns. Addressing the unknowns and clarifying expectations for youth and young adults who are transitioning to an adult medical home can make this change exciting and empowering! That empowerment extends beyond the young adult as the family, pediatrician, and adult health professional all partner together to make this change a positive one.

While transitioning to adult health care can be challenging for all youth, more than half of American families of youths with special health care needs (YSHCN) do not receive needed support for a smooth transition. Surveys report that a majority of pediatricians and internists believe that finding an adult medical home for young adults with childhood-onset conditions is difficult. These physicians also feel that better office systems for the coordination of health care transitions would be helpful.

To address the needs outlined above and more, a new clinical report—Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home—authored by the American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP), and American College of Physicians (ACP), was published in the July 2011 issue of Pediatrics.

“Pediatricians have asked how to incorporate better transition supports into their busy practices, and the new clinical report—with its detailed practice-level guidance—will help show them the way.” —Carl Cooley, MD, FAAP, co-lead author

The clinical report follows an algorithmic format from age 12 through the transfer of care to an adult medical home. The report recommends that practices have a policy related to this important transition of which families should be made aware by age 12. A few years later, depending on the youth—processes of planning and educating the youth, empowering them with skills needed to manage their own health—are recommended. Finally, the timing of the actual transfer of care to an adult physician requires flexibility based on many factors.

“As ‘best practice’ for both pediatric and adult clinicians, the new clinical report will improve access to adult health care,” — Paul J Sagerman, MD, FAAP, co-lead author

To support the report’s guidance, Got Transition, the new National Health Care Transition Center, works with pediatric and adult primary care practices in a learning collaborative model to develop a practical package of tools and supports. (For more information, see the Promising Practices section.)

Effective transition is a critical component to continuous care in the medical home. Careful attention to the transition process can lead to youth and their families being more invested in their own care and in developing partnerships with their care providers across the life span.

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PROMISING PRACTICES

Transition of Care Consultation Service for Young Adults with Special Health Care Needs (YASHCN)
In 2010, a Transition of Care (TOC) consultation service, staffed by a senior pediatrician and social worker knowledgeable about adult community resources, was initiated at Nemours/ Alfred I duPont Hospital for Children (Wilmington, DE) serving 90,000 patients. Providers or family members can refer any YASHCN for assistance in the creation of individualized transition plans addressing chronic medical concerns as well as non-medical issues. YASHCN, family, pediatric providers, and the TOC team work collaboratively to develop transition action plans, including development of self-management skills. The TOC team also provides anticipatory guidance regarding differences between pediatric and adult health care systems and community support systems.

To assess the complexity of patients, their issues, and which disciplines utilized the Transition service, the following were analyzed: patient's age at referral; primary and secondary diagnoses of patients; source of referral; subspecialties involved in ongoing care; identification of specific adult health care providers; technology dependence; cognitive, communication and ambulatory skills; guardianship, residential, financial, insurance, home care, vocational, educational and recreational issues. Thus far, the transition consultation service has been successful in addressing transition issues in an anticipatory fashion. For more information contact Rita Meek, MD (rmeek@nemours.org) or visit  www.nemours.org/ transition (coming in October 2011).

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Transition from Pediatric to Adult-Centered Medical Care Conference: A Cross-Institutional Collaborative
Since 2009, the Harvard Brigham and Women's/Children's Hospital Boston Medicine-Pediatrics residency program has maintained a monthly Transition to Adult-Centered Medical Care Conference. This multidisciplinary interest group was developed to facilitate more effective care transitions for patients with childhood-onset chronic illness. The hypothesis is that the transition process is smoother when clinicians have the opportunity to network and to understand available resources. Participants include physicians, nurses, social workers, and research staff. Residents and other trainees are especially encouraged to attend. A diverse array of departments from both pediatrics and internal medicine are represented.

Each month a different department presents their experiences in transition: clinical programs, ongoing research, recent publications, or challenging cases. Attendees also learn about best practices, including up-to-date subspecialty guidelines and national policy initiatives. Although initially designed to bridge the gap between Children's Hospital Boston and Brigham and Women's Hospital, several other institutions from the region now participate. For more information contact Kitty O'Hare, MD (frances.ohare@childrens.harvard.edu) or Niraj Sharma, MD (nsharma5@partners.org).

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The Health Care Transition Initiative at the University of Florida
The Health Care Transition Initiative at the University of Florida aims to increase awareness of, gain knowledge about, and promote cooperative efforts to improve the process of preparing youth for the move from child-centered (pediatric) to adult oriented health care. While the long-term goal is to improve the transition process for all children, current efforts focus on youth and young adults with disabilities and special health care needs.Transition Initiative activities include: research, product development, and networking. Products include: research reports, a Web-based transition planning guide, informational booklets and videos, and on-line training programs. 

The on-line training for health care providers offers free continuing medical education (CME) credits and continuing education units (CEUs) to professionals in Florida. The Talking with Your Doctor training video and Web site presents the GLADD approach to communication, which helps youth and young adults get answers to the questions they have about their health; understand why it is important to be honest and give detailed information to health care professionals; and work in partnership with providers to develop a plan of care that they can and will follow. All products can be downloaded at no cost and reproduced to support local efforts to enhance the health care transition related knowledge and skills of adolescents, young adult, families and health care professionals. For more information about the Transition Initiative, contact John Reiss, PhD (jgr@ichp.ufl.edu).

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Growing Up and Out of Pediatrics: A Model for Transitioning to the Adult World of Medicine
Many pediatricians and families are apprehensive about transitioning the adolescent with special health care needs to an adult-oriented practice. Some internists may also feel uneasy taking care of young adults with chronic conditions of childhood origin. The Adolescent Medicine Fellowship program at Columbia University (New York City) includes fellows who have been trained in both pediatrics and internal medicine.Established by an adolescent medicine fellow who trained in combined internal medicine and pediatrics, the Young Adult Clinic at Columbia University Medical Center provides care to young adults with special care needs who are aging out of pediatric care.

Examples of chronic conditions seen in the practice include cerebral palsy, systemic lupus erythematosus, sickle cell disease, cardiomyopathy, traumatic brain injury, spina bifida, and primary pulmonary hypertension. By integrating a pediatrics-trained provider into an adult practice, patients and their families are able to experience a smoother transition into adult care. For more information contact Jennifer Chuang, MD, Adolescent Medicine Fellow, Columbia University Medical Center (jhc9006@nyp.org).

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SYSTEM CHANGE IN STATES

Illinois Transition Project: Illinois Chapter of the American Academy of Pediatrics (ICAAP) in collaboration with the Division of Specialized Care for Children (DSCC)
The Illinois Transition Project works to improve the transition to adult health care by providing training, resources, and technical assistance to both pediatric and adult primary care providers. The project will offer online trainings designed around key clinical activities in accordance with recommendations from the AAP, AAFP, and ACP. The trainings are accompanied by a comprehensive set of resources to assist health care providers in using a quality improvement approach to implementing health care transition services in their practice. ICAAP is applying to the American Board of Pediatrics to provide pediatricians with the option of pursuing Part IV Maintenance of Certification credit for participating in the training. Trainings are currently being pilot tested and will be available in the spring of 2012. For more information or to participate in project trainings, contact Kathy Sanabria (ksanabria@illinoisaap.com).

This project is supported by a grant from the US Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB).  

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New Jersey’s Community of Care Consortium for Children and Youth with Special Healthcare Needs: Transition for Youth with ASD & Other Developmental Disabilities

Transition to adult systems of care for youth with Autism Spectrum Disorders and Other Developmental Disabilities (ASD-DD) is a major focus for New Jersey’s Community of Care Consortium for Children and Youth with Special Healthcare Needs (CYSHCN). Transition improvements are being addressed in 5 key ways: 

  1. Providing a series of transition presentations to pediatric and adult primary care providers at a hospital and Federally Qualified Health Center. The presentations feature Erin Seigh, the Transition Coordinator for the State Implementation Grant ASD-DD and parent of 2 youth with autism, and Dr Steve Marcella, a pediatrician and internist;
  2. Focusing on transition for a full day as a major component of the program’s Medical Home Learning Collaboratives. This includes a parent/youth/practitioner panel, a USB drive of transition resources in English and Spanish, and collaborative activities for the medical home team, including a parent;
  3. Provide technical assistance and support to families around transition topics. Assistance is provided by parents of youth with ASD-DD at ASD Clinical Enhancement Programs;
  4. Facilitating a Statewide Youth Advisory Council. The Council includes youth with ASD and involves them in the Community of Care Consortium as well as a youth-run Facebook page; and
  5. Developing and disseminating transition resources including the Transition Roadmap for Youth, Transition Resources for Health Practitioners, Transition Tip Sheets (English and Spanish) and a new Autism Resource Guide to parents, health professionals, community providers, educators, and youth.

For additional information or to access the resources, click here or contact Erin Seigh (eseigh@spannj.org).

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FOR YOUTH & FAMILIES

Because we can all learn from a good “been there, done that” story, Mallory H. Cyr, National Youth Program Manager at the Got Transition National Center, was asked to share her transitions story.  

As I hear transition stories from across the country, I realize how unique my experience has been, especially because my successful transition process took place with a specialist, not my primary care physician. As I approached age 18, each practice handled my upcoming transition very differently. 

My pediatric gastrointestinal (GI) specialist initiated the conversation with me, explaining that since I was 18 it was my choice whether I stayed with him through my time away at college, or switched when I was 18, but that it was something I needed to start thinking about. I elected to stay with him through college, just because I knew I would be dealing with the health center and a lot of other changes, and wanted that consistency. After college, I met with an adult GI provider that was recommended by my pediatric GI specialist. He had already been involved in my treatment "behind the scenes" and was very excited to take on my case. I have been seeing him since 2007 and have established a wonderful partnership! I have even seen my health improve drastically with the choices we have made together.

My pediatrician didn’t give me or my family any recommendations for an adult practice that would be willing to take my case, but were adamant that I had to leave when I turned 18. When I gained new insurance through my place of employment, I decided to take a chance and have an introductory meeting with the adult provider my insurance assigned to me. As fate would have it, we hit it off. He was young, energized, and excited to learn about my condition and work with me to make sure my health stays at its best.

Looking back, I wish my pediatric practice had initiated more of a conversation about what was expected of me (and my parents) when I turned 18, so we could begin looking for adult providers. Also, some willingness to tell us of places that were taking new patients or had proven satisfactory for other families with special health care needs would have been helpful. I was lucky to find a place that was accepting new patients, because if not, I'm not even sure what I would be doing for primary care at this point. I think an increased awareness for pediatric providers of what is available for adult practices would be a huge asset to the transition process for all young adults.

Along with resources available to help clinicians partner with families on effective transition, there are also many resources available to youth and families. (For more information, see the Resources section.)

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RESOURCES

Resources for Clinicians

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Resources for Youth and Families

  • Got Transition National Health Care Transition Center—Youth and Family Information
    Got Transition has information, tools, resources and interactive ways to connect with other youth and families.
  • Kids As Self Advocates (KASA)
    A project of Family Voices, KASA is a national, grassroots project created by youth with disabilities for youth. Resources for youth include guidelines on how to prepare for and maximize a doctor’s appointment, how to keep track of health information, and how to advocate for health care needs and rights.
  • Family-to-Family Health Information Centers (F2F HICs)
    F2F HICs are staffed by family members with first-hand knowledge of the maze of health care services and programs for CYSHCN. Staff at F2F HICs understands the issues that families face, provide advice, and tap into a network of other families and professionals for support and information. Family Voices, through the National Center for Family/Professional Partnerships, provides families with technical assistance, training, and connections to other F2F HICs and partnering organizations.
  • Family Manual for Transition PDF
    Family Voices of Illinois, partnering with Title V CSHCN agency, parents, the Illinois Chapter of the American Academy of Pediatrics, and other state agency and advocacy agencies, created a manual for youth transition with sections on special education, adult supports, health insurance, employment, and more. The manual is available on CD, in hard copy and online.

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