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ARTICLE: Peter Scal and Marjorie Ireland Addressing Transition to Adult Health Care for Adolescents With Special Health Care Needs Pediatrics 2005; 115: 1607-1612 [Abstract] [Full text] [PDF]

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Transition and Transfer of Youth to Adult Health Care

Robert T. Burke, Patricia Flanagan MD, Ann-Marie Cardosi RN, BSN   (15 July 2005)

Transition and Transfer of Youth to Adult Health Care 15 July 2005
Robert T. Burke, Pediatrician Brown Medical School, Patricia Flanagan MD, Ann-Marie Cardosi RN, BSN Send letter to journal: Re: Transition and Transfer of Youth to Adult Health Care robert_burke{at}brown.edu Robert T. Burke, et al.	To the Editor, The issue of transition of adolescents and young adults with special health care needs to adult care was compellingly put forward in the 1989 Surgeon General report on Growing Up and Getting Medical Care: Youth with Special Health Care Needs.(1) In subsequent years there have been over one hundred articles published in the medical literature on the need for and challenges of transition and transfer to adult care. The publication of the Consensus Statement on Health Care Transition for Young Adults with Special Health Care Needs in 2002 intensified interest in the subject of health care transition and transfer while a timeline was set by Healthy People 2010.(2,3) The two related articles authored by Lotstein et al and by Scal and Ireland outlined the present status of the transition of adolescents to adult health care and the challenges yet to be fully faced in ensuring that transition is carried out efficiently and effectively.(4,5) Both of these studies focused on the critically important issue of the experience of young adults’ and their families’ experiences with transition and transfer from pediatric to adult health care. Each group of authors recognized the need to plan for transition of adolescents to adult care that has not yet become a routine part of the health care for young adults with special health care needs. Both discuss the need for additional research and for study of transition from a primary care practice prospective. However, as has been pointed out in these and previous publications, there is only limited research and literature on the role and experiences of primary care pediatricians in the transition and transfer of adolescents with special needs to adult care. Recently, a survey of all 170 primary care pediatricians practicing in Rhode Island on the transition and transfer of adolescents to adult health care was completed. There were 103 (61%) usable responses but represented responses from over 80% of the primary care practices in the state. The answers to the survey give important and valuable insights into the present state of transition and transfer of adolescents from primary care pediatrics to adult health care. One-third of responders had patients in their practices over 22 years of age and of these 47% had special needs, but all young adults aged 25 years or older had special health care needs. Only 13% of practices had written transition and transfer policies. Only 2% of responders reported that the transition process should begin in early adolescence as has been recommended in the joint consensus statement on transition. Only one-third of responders provided transfer summaries to adult care providers and only half for transferring adolescents with special needs. Only 18% contacted accepting adult providers after transfer. A surprising response from most responders was that they did not experience difficulty in finding adult providers for their transferring adolescents (70%) or even for those with special needs(51%). These providers generally explained that they were not actively involved in assisting families to find adult providers. Providers who took an active role in identifying sources of adult oriented care reported it to be moderately to very difficult to find accepting adult care providers especially for youth with special health care needs. 97% of replying pediatricians reported that insurers or health care plans were of no assistance in transferring adolescents with special needs to adult oriented sources of care.(6) The survey results reported in the two recently published articles and those of our own survey can be seen in a negative light or, conversely, can be viewed as representing a starting point for a new venture in pediatric primary care. The publication of the consensus statement in 2002 was the opening phase of a developmental process for the transition and transfer of adolescents with special health care needs for both pediatric and adult health care providers. A previous survey of Rhode Island pediatricians demonstrated strong interest by responding pediatricians to provide a medical home to care for children and adolescents with special needs. They listed some of the same barriers of lack of time, lack of staff, and of training and experience that have been previously reported concerning the care of children with special needs.(7) These findings and those of both recent and earlier reports indicate the need for training and education in the areas of transition and transfer of youth with and without special needs. Building on the interest and commitment of primary care pediatricians and, under the leadership of the Academy and the special needs pediatric community, the next phase should be to provide additional information and training both for pediatric residents and practicing pediatricians as well as for internists and other adult care providers. The information and resources needed to assist both pediatric and adult care providers in making transition and transfer a routine part of the health care of young adults with chronic health conditions could be built into the Academy’s existing Medical Home Project. Models of transition and transfer should be developed along with practical tools to assist the primary care practitioner in the transfer process. Even insurers and health care plans should be looked to in helping in the transfer process in providing both training and resources. Health care plans can become active partners in the transfer process since they could link pediatricians transferring care to accepting adult care providers. Reis and Gibson outlined the status of transfer of care in their article Health Care Transition: Destination Unknown that was included in the supplement of Pediatrics in which the joint consensus statement on transition was initially published.(8) While we are not yet at our final destination in the process of transition of youth with special health care needs to adult care the reports by Lotstein et al and by Scal and Ireland do mark an important early milestone that points to the road toward meeting the goal of Healthy People 2010. Robert T. Burke, MD, MPH Primary Care Center for Children with Special Needs Memorial Hospital of Rhode Island Brown Medical School Pawtucket, RI 02860 robert_burke@brown.edu Patrician Flanagan, MD Division of Adolescent Medicine Hasbro Children’s Hospital Providence, RI 02903 Ann-Marie Cardosi RN, BSN Primary Care Center for Children with Special Needs Memorial Hospital of Rhode Island Pawtucket, RI 02860 References: 1. Magrab P, Millar H, eds. Surgeon General Conference. Growing Up and Getting Health Care: Youth with Special Health Care Needs. Washington, DC: National Center for Networking Community Based Services, Georgetown University Child Development Center; 1898 2. American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians – American Society of Internal Medicine. A consensus statement on health care transition of young adults with special health care needs. Pediatrics. 2002;110(6 pt 2): 1304-1306 3. US Department of Health and Human Services, Maternal and Child Health Bureau. All Aboard the 2010 Express: A 10-Year Action Plan to Achieve Community-Based Service Systems for Children and Youth with Special health Care Needs and Their Families. Washington DC: Maternal and Child Health Bureau; 2001 4. Lotstein CS, et al. Transition planning for youth with special health care needs: results from national survey of children with special health care needs. Pediatrics. 2005;115(6): 1562-1568 5. Scal P, Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics. 2005;115(6): 1607- 1612 6. Burke R, Cardosi AM, Flanagan P, Price A, Spoerri M. Transition and Transfer of Adolescents to Adult Health Care: Survey of Primary Care Pediatricians Presented at: Pediatric Academic Society Annual Meeting, May 14, 2005, Washington, DC. 7. Burke R, Kiessling LS, Burke AT. Levels of Care: A Survey of Primary Care Pediatricians on the Care of Children with Special Health Care Needs, Unpublished data. 2001 8. Reis J, Gibson R. Health care transition: destination unknown. Pediatrics. 2002;110(6 pt 2): 1307-1314 Conflict of Interest: None declared

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