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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