On the road to adulthood for youth with rheumatic diseases: What health care professionals can do


  • Patience H. White

    Corresponding author
    1. Arthritis Foundation, Atlanta, Georgia, and George Washington University School of Medicine and Health Sciences, Washington, DC
    • 2011 Penna Avenue, NW Suite 610, Washington, DC 20006
    Search for more papers by this author

Transitions are a part of normal, healthy development and require change on the part of all involved in the process. Dreaming about the future, trying out new ideas, and planning for that future are key components in preparing for transition to the next step. Thinking about health issues is usually not on the radar screen for most youth as they travel toward adulthood, yet for youth with rheumatic disease, learning how to manage their health is essential to their overall success. Many youth with rheumatic disease can transition with minimal assistance; however, some of them and their families will need more guidance so the young person can become an independent adult who fully participates in the adult health care system and adult society. Ideally, transition in health care for youth with rheumatic disease should be a dynamic, lifelong process that seeks to meet individuals' needs as they grow up. The goal is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. Yet current pediatric and adult systems of care often do not foster the preparation, collaboration, or coordination of care needed for success. This editorial will discuss some of the current efforts within American medical organizations to improve health transitions and to offer health care providers caring for youth with rheumatic disease a few practical steps on how to help these young people to take charge of their health and their chronic disease, both of which are expected in adulthood. For more detail on how to develop a transition program at an institution or within a practice, an excellent article by McDonagh can be found in this issue of Arthritis Care & Research (1).

Society has made significant investments in health care that have resulted in improved outcomes for youth with rheumatic diseases and other children and youth with special health care needs (CYSHCN) (2). Today, more than 90% of CYSHCN survive beyond their 21st birthday (3) and the outcomes have equally improved for youths with rheumatic diseases. For example, the death rate for youth with juvenile idiopathic arthritis is only 2–4% (4), and the current 10-year survival for youth with systemic lupus erythematosus (SLE) ranges from 75% with renal disease to 95% without renal disease (5, 6) compared with the 1970s when the 10-year survival for a youth with SLE and renal disease was 40%. Although survival in childhood rheumatic diseases has improved, there continues to be considerable morbidity associated with these chronic diseases, many of which can be lessened with coordinated and consistent health care management. The combination of the variable course of rheumatic diseases and the turmoil of adolescence often requires that health care professionals carefully plan with youth and their families for their future during this turbulent time. Youth with childhood-onset rheumatic disease, compared with their peers without a chronic illness, will need continuity of services such as physical/occupational therapy, physician visits, recurrent laboratory tests, and medications throughout their adolescence and into adulthood, resulting in the need to bridge the differences in approaches between pediatric and adult health care systems. The youth and family have to learn to navigate the change from an interdisciplinary, proscriptive, family-focused pediatric system to the multidisciplinary, patient-focused adult system.

Whether youth under the age of 18 are diagnosed by a pediatric rheumatologist or an adult rheumatologist, both will need to take steps to prepare the young people to manage their illness as they traverse their adolescence and move on to other providers and systems of care. The 2006 American College of Rheumatology workforce study revealed that both pediatric and adult rheumatologists care for youth with rheumatic disease during the transition years (7). The study found that 45% of pediatric rheumatologists are reluctant to care for youths after age 18 and ∼33% are reluctant to care for youths over age 21. Similarly, 27.7% of adult rheumatologists see youth 16–17 years of age and only 22.4% stated that they were reluctant to treat youth between the ages of 12 and 15. Thus, both pediatric and adult rheumatologists who care for young people in the transition years should develop processes and procedures in their practices to better prepare youth to manage their health and health care in adulthood. Despite the involvement of both pediatricians and adult physicians in the care of youth in transition, failure to coordinate care between providers and systems has been well documented and adversely affects both quality and efficiency of care. Examples abound of youth with rheumatic disease being transferred without planning, information, or warning to their next provider. Some youths who are unprepared for the adult system or the next adult provider speak of feeling “abandoned,” try to return to their original provider, or fail to follow up posttransfer with their new provider. To date, much of the quality work has focused on improving care within each of the pediatric and adult medicine spheres. A paucity of work has focused on improving coordination of care across these providers and systems. To truly improve care and outcomes for youth with rheumatic disease, it is imperative to implement systems and processes to fill in the gaps—the “white space”—between the pediatric and adult health care systems.

To tackle the gap between the 2 systems, several medical associations have developed statements confirming the important role of the physician and other health care professionals in this transition process (8–10). One of the grandmothers of pediatric rheumatology, Dr. Barbara Ansell, stated in an article in 1998 that the prime responsibility of health care providers is the medical management of youth's disease, but the outcome of medical management is irrelevant unless the young people acquire the skills to manage both their condition and their lives (11). Yet in 2000–2001, a national survey of CYSHCN coordinated by the US National Center for Health Statistics showed that only 50.3% of respondents had discussed with their primary care provider their changing health care needs on moving to adult health care, 30.8% had developed a transition plan, 29.9% had discussed moving to an adult provider, and only 16.4% felt their transition needs had been addressed comprehensively (12).

In 2002, a consensus document on transition was approved by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine (13). This consensus statement is a call to action on the critical first steps needed to ensure the successful transition of young people with chronic illnesses to the adult health care system. The consensus statement states that all young people with special health care needs such as rheumatic conditions should have the following: a professional with the appropriate transition core knowledge and skills who attends to the unique challenges of health care transition; a written health care transition plan by the age of 14 including a constantly updated medical summary that is portable and accessible to the youth and family; care guided by the primary and preventive care guidelines for all adolescents and young adults; and affordable, continuous health care coverage. In 2005, a questionnaire reflecting components of the consensus statement was developed and completed by 21 practices (146 pediatricians and 36 nurse practitioners) in 18 counties of the Commonwealth of Pennsylvania to understand the progress being made on adopting these guidelines. The providers in these practices voluntarily participated in Educating Practices in Community Integrated Care Pennsylvania Medical Home Program, a statewide consortium of pediatric practices dedicated to quality improvement (14). All practices cared for CYSHCN. The response rate was 100%, with a lead clinician in each practice completing the survey for the practice. Results revealed the following about the practices' approaches: 33% had a practice-wide policy on when to transition youth out of their practice, with the age of transfer being between 18 and 24 years; 29% identified a person with knowledge and skills to focus on the transition issues of the youth in the practice; 19% discussed before age 18 the legal issues that occur around age 18 concerning medical decision making; 31% had created transportable medical records; 5% had developed individual transition plans; 43% utilized preventive guidelines for adolescent care; 24% assessed the youths' and families' readiness for transition; and 29% assisted in a plan for health insurance after age 18–21. In summary, 57% of the general pediatric practices stated that they had not started developing practice transition processes but wanted assistance to begin, and 24% were working on this and believed they were halfway there. Thus, even general pediatricians who are focused on providing comprehensive coordinated care are not fully preparing CYSHCN for transition to adult health care providers (15). A checklist to rate your practice on your transition processes that is based on the key components outlined in the consensus statement is shown in Figure 1.

Figure 1.

From Healthy and Ready to Work National Resource Center check list (funded in part by the US Department of Health and Human Services, Health Resources and Services Administration). URL: www.hrtw.org.

In 2007, the American Board of Internal Medicine Foundation spearheaded an emerging consortium of more than 16 generalist and specialty societies and other stakeholders called Stepping Up to the Plate Alliance (16), which recommended principles and standards for improving transitions across systems and locations of care that should be incorporated into medical practices. These principles should be a guide for those pediatric patients who “age out” of pediatric primary and specialty services and move to the care of adult providers or move from the initial care of an adult primary care or specialty provider to the care of other adult providers. This group of associations and organizations affirmed that systems must be in place to ensure information transfer by and independent of the patient, and they should prepare their patients for transitions, including helping them establish relevant expectations, self-management skills, plans for followup, and contingencies. Physicians, the report concludes, must have communication and education skills including such techniques as patient “teach back” so that patients understand the plans and can manage the necessary components of their health and disease.

Transition for youth with rheumatic disease should be a deliberate, coordinated provision of developmentally appropriate and culturally competent assessments, counseling, and referrals to assist them in self-determination, person-centered planning, work/independence, inclusion in community life, and preparation for adult health care. Many of these areas seem self explanatory, but often when one is so accustomed to taking care of an issue, it is difficult to breakdown the process components and teach others how to do it. This is one of the most important roles parents and health care professionals have to fulfill as they guide young people to gradually take control of their lives and manage their own health. For example, youth must know their disease and medications, what to do in a health emergency, and practice, how to call in their own prescriptions and make their own appointments. A transition plan can be created that lists the tasks that need to be mastered and by what date/age. To allow time for trial and error, young persons should be managing their own health and health care a year before they plan to live on their own or go away to postsecondary school.

Similar to young persons with rheumatic disease, their parents need guidance on how to hand over the health care they have provided for their child. It can be difficult for parents to “let go,” and they can become hypervigilant in their worry about the youth's health not allowing the youth to test their independence. The health care provider can offer guidance by discussing the expectation of parents' changing role (16) moving from a being a provider of their child's care to acting as a consultant, which is usually someone who answers only when asked. Discussing this expected progression of their role and devising a written transition plan can prepare parents for the day the youth turns 18, when the parents, by law, cannot be a part of the “new” young adult's health unless the youth allows it in writing. Starting the transition process several years before the date of transfer is a corner stone of the transition process. As stated in the accompanying article by McDonagh, research has shown that the optimal age when youth are more receptive to starting discussions of the transition process is around 11–12 years, and that youths become increasingly unreceptive as they progress in their teenage years (1).

Before the transition process with the youth and family begins, an essential starting place for a practice caring for youth with rheumatic disease is to decide the transfer policy, including the expected time when most youth should be moving to an adult health care practice. Agreeing on this policy and posting it for youth and families to see when they come to the office will give a clear coordinated message to the families that this change is an expected part of growing up. Other aspects of a transition policy for a transition program are outlined in the article by McDonagh and can be adapted to individual practices. The McDonagh article ends with informative tables that include a suggested transition planning pathway and an excellent list of resources with many examples of transition materials that can be easily adapted to rheumatology practices (1). In conclusion, youth with rheumatic disease are going to grow up and move on, therefore planning with them for their transition is an essential part of a health care professional's role and can range from a few reminders to the need for the development of a full-service transition program as presented by McDonagh. In either case, health care providers must begin to create the necessary linkages between the pediatric and adult health care systems so that youths with rheumatic diseases have the skills and attitudes needed to have a successful transition toward a healthy future.