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Special Needs Teens Face Rocky Path to Adult Care


 

BOSTON — If those practicing in Rhode Island are any indication, primary care pediatricians have some work to do when it comes to incorporating guidelines provided by the American Academy of Pediatrics for the transition and transfer of adolescents with special needs to adult health care.

A survey of 103 pediatricians, representing 80% of pediatric primary care practices in the state, showed that 87% have no formal policy for transferring adolescent patients with special needs to adult health care. This suggests the specialty is in the early stages of adopting the guidelines, according to Dr. Robert T. Burke, who presented the findings in a poster at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine.

A consensus statement published jointly in 2002 by the AAP, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine (now the American College of Physicians) on such transition and transfer of care was approved as policy by the boards of these organizations.

The statement aimed to “ensure that by the year 2010 all physicians who provide primary or subspecialty care to young people with special health care needs (1) understand the rational for transition from child-oriented to adult-oriented health care; (2) have the knowledge and skills to facilitate that process; and (3) know if, how, and when transfer of care is indicated” (Pediatrics 2002;110:1304–6).

Adults with special health care needs deserve an adult-focused primary care physician, according to the statement.

Among the “first steps” for ensuring a successful transition, as outlined in the statement, are preparing and maintaining an up-to-date medical summary that is portable and accessible, and creating a written health care transition plan by age 14 along with the patient and patient's family. However, in addition to a lack of formal policies for transferring patients, the survey showed that a third of respondents had patients over age 22 years in their practice.

About half (47%) of these patients had special needs, and all of the patients over age 24 years had special needs, Dr. Burke of Brown University, Providence, R.I., reported.

Categories of transfer that emerged from the survey included “age out,” “drop out,” “forced out,” “hang out,” “move out,” and “transfer out.” (See box.)

About 19% of adolescents in the practices dropped out overall, but only 7% of those with special needs dropped out. Furthermore, only 7% of adolescent overall “hung out” after age 22 years, while 28% of those with special needs “hung out” after age 22 years,” Dr. Burke noted.

The respondents completed a 13-item questionnaire about office policies, procedures, and processes for transferring adolescents with and without special health care needs.

Responses indicated that less than 3% of physicians believe transition should begin in early adolescence, 64% thought transition should begin 1 year before transfer, and 28% said transition should occur at the time of transfer.

About a third (30%) reported difficulty with transferring adolescents to adult care overall, and half had difficulty transferring those with special health care needs.

Also, only 31% provided written transfer summaries to accepting adult providers and only 18% had direct contact with those providers.

The findings suggest that additional efforts to educate physicians and promote the guidelines are needed.

“We are at the beginning of a process that will have challenges for both pediatric and adult care providers,” Dr. Burke said in an interview, noting that a number of initiatives are underway to promote the use of the guidelines in Rhode Island.

A similar study of physicians who will be accepting adolescent patients (including internists and family physicians) is underway, and a guidebook on the subject of transfer of care for both pediatric and adult health care providers is in development, Dr. Burke said.

Models for transition and transfer to adult health care also are being developed in a collaborative effort that includes both pediatric and adult care providers, the Rhode Island Department of Health, and health care plans, he noted.

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