The Journal of Pediatrics
Volume 152, Issue 4 , Pages 453-455, April 2008

Understanding Transition Issues: Asthma as an Example

  • Amy J. Houtrow, MD, MPH (Assistant Professor of Clinical Pediatrics)

      Affiliations

    • Corresponding Author InformationReprint requests: Amy Houtrow, MD, MPH, 500 Parnassus Ave, MUE 411, Box 0136, San Francisco, CA 94143.
    • ,
  • Paul W. Newacheck, DrPH (Professor of Pediatrics and Health Policy Studies)

University of California, San Francisco, San Francisco, California

Article Outline

 

Assuring uninterrupted access to health care for transitioning youth is a priority for both policy-makers and health care providers, as pointed out by Scal et al in this issue of The Journal.1 In this study, the authors examined adolescents and young adults with asthma, an important population of individuals with special health care needs. Consistent with the natural history and increasing prevalence of the disease, Scal et al found a higher prevalence of asthma in adolescents compared with young adults. They also identified higher rates of insurance and an increased likelihood of having a usual source of care for the adolescents with asthma. Furthermore, compared with young adults, adolescents with asthma were less likely to face financial barriers to care. Across all demographic spectra, young adults with asthma more commonly reported delays in care and unmet need because of financial constraints. Because the lack of consistent health care providers and insurance were found to be major barriers to care, Scal et al simulated the effects of increasing rates of insurance and the likelihood of a usual source of care for the population of adolescents and youth with asthma. With this simulation, the percentage of delays and unmet needs dropped dramatically, but young adults were still at greater risk of experiencing delays and unmet needs because of financial barriers.

See related article, p 471

Both adolescents and young adults with asthma were found to have high rates of delayed care because of non-financial barriers, including difficulties with transportation, inconvenient office hours, getting appointments, long waits at the provider’s office, and being able to get through on the phone. In contrast to the findings for financial barriers, the research did not show age-related differences in delays because of non-financial barriers.1

On the basis of the results of the Scal study, one could correctly conclude that although insurance coverage and having a usual source of care contribute to better access, they do not sufficiently address the access problems experienced by youths transitioning out of the pediatric health care system. One major limitation of this study is that a parent answered questions for the sample adolescents and young adults answered questions for themselves. This likely leads to reporting bias because the family unit might not be as financially strained by the cost of asthma care compared with the young adults in the survey. However, it is important to identify the other contributing factors that might explain the persistent disparity in access. Research to delineate these factors is essential to guide policy toward assuring uninterrupted access during and beyond the transition period. Because asthma is an exceptionally common chronic disease, understanding the added barriers to access experienced by young adults with asthma could help uncover and explain barriers to access for other types of chronic health conditions.

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Using Asthma As an Example Chronic Disease 

Unlike the rare chronic conditions of childhood such as cystic fibrosis and congenital heart disease, asthma is a common chronic disease that affects individuals across the lifespan. Consequently, we would expect pediatric and adult primary health care providers to have high levels of competence in caring for people with the condition. Therefore, transitioning care should be less complex than care of adolescents with rare disorders of childhood. Current practice guidelines for asthma are clear in the need for ongoing monitoring and management in the primary care setting.2 Thus, asthma is an ideal model disease to evaluate during the transition because best practice management recommendations exist, and most primary care physicians are well trained to care for patients with asthma.

Although the morbidity and mortality rates of asthma is high, with appropriate medical management, medication, and self-management, the symptoms of asthma can be controlled.2 Furthermore, the disease tends to be episodic and rarely is debilitating unless poorly managed. Although asthma frequently abates in adulthood, it is still a prevalent condition, with 6.7% of adults reporting the diagnosis and >55% of those individuals reporting an asthma attack in the past 12 months.3 Researchers often point to the variable natural history of the disease to account for the changes in health care use across the lifespan. We would argue that access to health care also plays a major role in the presentation of asthma in transitioning youth, and asthma, therefore, deserves attention as a disease to monitor closely during youth. For example, despite having the lowest rates of hospitalization, the mortality rate from asthma is 3-times higher for youth aged 15 to 19 years than for children aged 5 to 9 years.3, 4 These data indicate that individuals with asthma have extensive ongoing needs for health care services that persist beyond pediatric care.

It is well known that adolescence is a time for intense emotional transitions toward autonomy and self-sufficiency. Young people with asthma face additional challenges because of their chronic disease.4 However, unlike many other youths with special health care needs, youth with asthma rarely face cognitive and intellectual challenges. Nonetheless, youths with asthma are not transitioning to adult health care successfully and further evaluation of the reasons why is warranted.

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Asthma in the Context of Transition Recommendations 

Medical transition is the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.”5 The goal is to ensure comprehensive and developmentally appropriate care in an uninterrupted fashion. In 2002, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians–American Society of Internal Medicine put forth a consensus policy statement on transition. The consensus panel identified 6 critical first steps: 1) ensuring all youth have an identified health care professional attending to transition issues; 2) incorporating transition training into physician competencies; 3) creation of portable medical records; 4) creation of individualized transition plans; 5) ensuring primary and preventive services for youth with special health care needs, and 6) ensuring affordable and continuous health care coverage.6 Building on this consensus statement, the Society for Adolescent Medicine offered additional recommendations in 2003 to improve education of adult-providers, families, and patients, encourage primary care physicians to take the lead in transition planning, support the development of best practices including adult-based primary care for all adults regardless of childhood-acquired illness, and eliminate protocols, policies, and restrictions by hospitals and payers that impede timely transitions.7

When evaluating transition issues for adolescents with asthma, it is clear that some recommendations are more easily followed than others. According to Scal et al, 95% of adolescents with asthma have a usual source of care. These care providers should take the lead in addressing transition planning by assisting with identification of an appropriate adult-provider, creating a transition care plan, and creating a portable medical record. Pediatricians, although clearly capable of these tasks, have many barriers to success, including inadequate resources and reimbursement. Unfortunately, failure to establish care with new adult-providers is common, because 20% of young adults with asthma have no usual source of care.1 To address this failure, more work needs to be done to educate and engage adult-primary care providers who can attend to the primary and preventive care and asthma management of young adults. Furthermore, youth and their families need to understand the importance of establishing care with adult-providers even in the face of relatively good health.

Although educating practitioners and changing provider behaviors are ongoing, more extensive policy changes are needed to address the additional recommendations of the aforementioned consensus statements. Training in transition management is occurring across the country in medical schools and residency training programs, but so far there are no formalized competencies required by the American Board of Pediatrics.8

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Insurance As an Important Contributor to Access 

Scal et al found that although 7.9% of adolescents with asthma were uninsured, 26.7% of young adults with asthma were uninsured. In general, young adults aged 19 to 24 years have the highest rate of being uninsured of any age group in the United States.9 Insurance status has been repeatedly identified in the research literature as a major contributor to access to care.10, 11 The consensus statements highlight the need for adequate health insurance to ensure a smooth transition to adult health care. As many youth age out of their parents’ private insurance plans and opportunities for obtaining employer-based coverage diminish, the problem of being uninsured is likely to worsen. In the past 2 decades, improvements in public insurance for the poor and near poor have significantly increased the numbers of children and adolescents receiving insurance, but these expansions in public coverage have not been extended to young adults. Indeed, the continued erosion of employer-based private insurance is likely to result in further losses of coverage for young adults. These trends are likely to lead to higher levels of unmet need and delays in seeking care. Therefore, despite all of the efforts on the part of the individual health providers to assist and plan for transition, our current health care financing system will continue to inhibit successful access to care for young adults.

With approximately 500,000 youth with special health care needs coming of age each year, it is essential that providers and policy-makers attend to their health care transition needs. Further understanding of the gaps in access for this population is especially important.12 Scal et al have identified the importance of having a usual source of care and insurance, but rightly demonstrate that access to care is much more complex. Although having insurance and an identified provider are imperative to a successful transition, they are not sufficient to eliminate the financial barriers to access. Substantial non-financial barriers to care are also present, and these must be addressed if youth with special needs are to receive the services they need to successfully transition to adulthood. The work by Scal et al sets the stage for additional research in this area and underscores the importance of advocacy for changes to our health care financing and delivery system and elimination of financial and non-financial barriers to care.

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References 

  1. Scal P, Davern M, Ireland M, Park K. Transition to adulthood: delays and unmet needs among adolescents and young adults with asthma. J Pediatr. 2008;152:471–475
  2. National Heart Lung and Blood Institute. National Asthma Education and Prevention Panel Report 3 #08-5846. Bethesda, Md: National Institutes of Health; 2007;
  3. Moorman JE, Rudd RA, Johnson CA, King M, Minon P, Bailey C, et al. National surveillance for asthma—United States, 1980-2004. MMWR Surveill Summ. 2007;56:1–54
  4. Couriel J. Asthma in adolescence. Paediatr Respir Rev. 2003;4:47–54
  5. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions (A position paper of the Society for Adolescent Medicine). J Adolesc Health. 1993;14:570–576
  6. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–1306
  7. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the society for adolescent medicine. J Adolesc Health. 2003;33:309–311
  8. American Board of Pediatrics. Booklet of information November 2006-October 2007. www.abp.orgAccessed November 4, 2007
  9. Fishman E. Aging out of coverage: young adults with special health needs. Health Aff. 2001;20:254–266(Millwood)
  10. Newacheck PW, Hung YY, Park MJ, Brindis CD, Irwin CE. Disparities in adolescent health and health care: does socioeconomic status matter?. Health Serv Res. 2003;38:1235–1252
  11. Callahan ST, Cooper WO. Access to health care for young adults with disabling chronic conditions. Arch Pediatr Adolesc Med. 2006;160:178–182
  12. Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics. 2005;115:1562–1568

PII: S0022-3476(07)01134-1

doi:10.1016/j.jpeds.2007.11.038

Refers to article:

  • Transition to Adulthood: Delays and Unmet Needs among Adolescents and Young Adults with Asthma , 10 December 2007

    Peter Scal, Michael Davern, Marjorie Ireland, Kyong Park
    The Journal of Pediatrics April 2008 (Vol. 152, Issue 4, Pages 471-475.e1)

The Journal of Pediatrics
Volume 152, Issue 4 , Pages 453-455, April 2008

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