The Transition From Pediatric Care

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Most adolescents with special health care needs are inadequately prepared for the transition to adult health care.

In 2011, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians published a clinical report on practice-based implementation of care transition for youth beginning in early adolescence. This transition process ensures that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as a person moves from adolescence to adulthood, ideally between the ages of 18 and 21 years.¹

Approximately 4.5 million or 18.4% of U.S. youth aged 12 to 18 years have a special health care need.² To monitor national and state performance on the transition of care and other core outcomes for this population, the Department of Health and Human Services’ Maternal and Child Health Bureau (MCHB) partnered with the Centers for Disease Control and Prevention’s National Center for Health Statistics (NCHS) to periodically (every 4 to 5 years, beginning in 2001) conduct the National Survey of Children with Special Health Care Needs (NS-CSHCN).

In their recent report, McManus and colleagues³ outline the transition results from the 2009–2010 NS-CSHCN. They examine the populations, conditions, and health care characteristics associated with successful preparation for transition of care of children and young adults with special health care needs, and they discuss strategies to overcome obstacles to care transition from pediatric to adult care.

SURVEY METHODS

The NS-CSHCN was designed and funded by the MCHB and conducted by the NCHS. Independent random samples of U.S. households were identified through a random-digit dial telephone survey; these households then were screened to include those with parents or legal guardians with children younger than 18 years of age. Among these households, parents or guardians with a child with special health care needs were identified by way of a 5-item screening tool. The 2009–2010 NS-CSHCN included an additional random-digit dial sample of cell phone users. Between July 7, 2009, and March 2, 2011, a total of 17,114 interviews were completed for youth with special health care needs between the ages of 12 and 18 years.

The composite measure of the transition core outcome was calculated using responses to 4 component measures in the NS-CSHCN and to their follow-up questions. The measures examined whether the following topics had been discussed: transition to an adult provider (asked only if respondents reported that their child saw a pediatrician for care), the child’s changing health care needs, maintaining health insurance coverage, and the child’s taking more responsibility for self-care.

Of the 4 component measures, 3 asked a follow-up question when respondents reported that a discussion on the topic had not occurred. The follow-up question assessed whether the parent or guardian would have found a discussion on the topic helpful. To successfully meet the overall transition core outcome, the respondent must have reported either that each of the first 3 discussions took place, or that a discussion on the topic would not have been helpful, and that the child’s doctor “always” or “usually” encourages the child to take increased responsibility for his or her own health care needs.

RESULTS

Overall, only 40% of youth with special health care needs met the national transition outcome. The topic that health care providers most often discussed with the youth who met the national transition outcome was taking increasing responsibility for self-care. This was followed, in decreasing order, by discussion about the child’s changing health care needs, discussion about switching care to an adult provider, and discussion about maintaining health insurance coverage.

Among the socioeconomic factors associated with meeting the core transition outcome were being female, being non-Hispanic white, speaking English at home, and having a family income of 400% or more of the federal poverty level. Health characteristics that had a positive impact on a child’s transition preparation included having a special health care need that does not affect activities; having a condition other than an emotional, behavioral, or developmental condition; receiving care within a medical home; and having health insurance.

McManus and colleagues’ study demonstrated that most youth with special health care needs are not getting the preparation they need from their health care providers for the transition from pediatric to adult health. No significant improvements in transition preparedness were noted between the 2005–2006 NS-CSHCN and the 2009–2010 survey, despite numerous efforts to educate health care providers and consumers. The authors call for focused attention on improving the lagging transition performance of certain subgroups of adolescents, including boys and black and Hispanic youth, as well as adolescents with lower incomes; those with disabilities; those with mental, behavioral, or developmental conditions; those not in a medical home; and those lacking health insurance.

CONCLUSIONS

The results of this study suggest that many parents do not recognize the need to address their child’s transition to adult care until the child’s late adolescence, impeding preparation for the change. Increasing the percentage of youth who take responsibility for their own care is critically important, but specifically addressing the switch to adult-focused health care also is necessary. The authors call for strengthened efforts to educate parents about the significance of this transition and to offer them practical advice for supporting their child’s self-care and for partnering with health care providers to identify adult medical home and specialty care providers.

Despite the study’s limitations, it suggests that making progress in the transition of children and young adults with special health care needs from pediatric to adult health care will require more concentrated attention, with priority given to youth who are least likely to get transition support. These efforts should be carefully integrated with payment reforms, insurance expansions, and health information technology implementation, all within the medical home model of care.n

REFERENCES:

1. American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182-200.

2. Data Resource Center for Child and Adolescent Health. Demographics and CSHCN prevalence for all children ages 0-17. http://childhealthdata.org/browse/survey/results?q=1792. Accessed June 18, 2013.

3. McManus MA, Pollack LR, Cooley WC, et al. Current status of transition preparation among youth with special needs in the United States. Pediatrics. 2013;131(6):1090-1097.