Division of Pediatric Rheumatology PTD, Stanford University Medical Center, Stanford, California, USA.
Correspondence to: C. Sandborg. E-mail: sandborg{at}stanford.edu
Transitional care for adolescents with childhood-onset chronic diseases, including juvenile idiopathic arthritis (JIA), has become of topical interest, especially as more children with disabling or chronic conditions are surviving into adulthood. This issue has transcended into the realm of health policy, leading to the formation of national initiatives to address transitional care for adolescents and young adults with special health-care needs (ASHCN) in the United States (US) and the United Kingdom (UK). In this issue of Rheumatology, Shaw and colleagues, on behalf of the British Paediatric Rheumatology Group (BRPG), continue to report findings on their comprehensive analysis of the state of transitional care in the UK for adolescents with JIA. This study reflects how we are clearly only at the initial steps of addressing some of the objectives listed in these health-care policies.
The term transition has been defined by the Society of Adolescent Medicine as the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems. It implies that a process is involved which requires years of education and preparation for all affected parties including the patient, the patient's family, medical and nursing staff, as well as other ancillary persons or services such as social workers, teachers and insurance companies [1]. Transitional care for ASHCN is often ignored by most physicians and other health-care providers, whether on the paediatric or the adult practitioner end of the spectrum, until the actual process of transfer occurs from the paediatric to adult system of health care. In many respects, the transfer of care is just one element of the transition process and issues pertinent to transition must be continually addressed prior to and after the transfer of care occurs. When these issues are neglected, patients and families often feel ill-prepared and abandoned at the time of transfer.
Adolescents undergoing the transitional process have numerous additional developmental milestones they are achieving beyond the act of transfer to an adult provider. These milestones include the change from dependence to independence, from school to work, and from family home to community living, and all of these elements can influence the success of the transitional process if not adequately addressed. Since each individual patient achieves these developmental stages at different chronological ages, this has led to some controversy with regard to the appropriate age for transfer of care. Rheumatology specialists must understand that the medical aspects of disease and symptom control and relief, while very important to the care provided, are only partial components of the developmental and transitional process. Ideally this process must include the development of adequate social and vocational skills, amongst other issues. While we as practitioners try to address these other components of transition, we often do not have the skills, time or knowledge to properly cover these topics, and it requires a multidisciplinary team to assemble all the necessary components of a good transition together. Many models of approaching transition cite use of a key worker or a designated individual dedicated to coordinating the process and helping to establish a medical home for the teenager or young adult [2].
The topic of transitional care of ASHCN has been discussed in the literature for the past 15 years, and people have recognized the importance of establishing guidelines and programme models to help smooth the transition process. Numerous consensus statements by various medical organizations, including the American Academy of Pediatrics, Society of Adolescent Medicine, American Academy of the Family Physicians, American College of Physicians and the Royal College of Paediatrics and Child Health have outlined theoretical and ideal components for transitional programmes [1, 36]. Through the years these guidelines have been revised as we acquire a better understanding of the process and the difficulties we face in achieving these goals. The 2002 consensus statement from the various American organizations articulated six critical first steps to ensure successful transition to adult-oriented care:
The inclusion of addressing transitional care in national health-care initiatives and policies has been based on these various consensus statements as well as realization of the importance of this topic in the public health realm. In the United States, the Bureau of Maternal and Child Health through the Healthy People 2010 initiative has set out to tackle transition care for children with special health-care needs as one of their objectives [7]. The UK Department of Health in recognizing the importance of this topic has drafted a similar policy in the National Service Framework for Children [8]. In order to follow through with these health policies, more formal research is necessary to evaluate programmes and guideline adherence. This issue requires further development of a research methodology including creation of validated and accepted outcome measurements.
Thus far, much of the research regarding this topic has focused on transition needs assessment in ASHCN. Numerous reports have detailed the current state of transition of adolescents and young adults with chronic illness, and many have revealed the lack of transition protocols and other deficiencies [911]. Most of the available research has been descriptive in nature and has focused on adolescent transition in specific conditions such as juvenile diabetes, spina bifida, sickle cell disease and cystic fibrosis [1215]. Because of the similarities of issues that pertain to transition for all of these conditions, this has led to the general guidelines and policies noted above.
Adolescents with JIA also present with many of the same issues with regard to transition, and a variety of papers have discussed this topic [1618]. Only one publication by Rettig and Athreya has formally evaluated the success of a transition program in JIA patients [19]. This study demonstrated that keys to transfer were early preparation and the creation of a separate transition clinic for teenagers which resulted in better future follow-up. For many practitioners, this model may not be feasible or practical because of the expense, lack of clinic space and personnel to run such a clinic, lack of adult and paediatric practitioners who are willing to provide overlap care, and issues with insurance coverage. As a result, there still does not exist the most practical or best model for transitional care. Even if there were a best model for delivering transitional care, each patient's transition programme should be personally individualized to fit their specific needs and would require flexibility with its implementation.
In the UK, the British Paediatric Rheumatology Group (BRPG) has set out to assess the state of transitional care in patients with JIA. They have undertaken a multifaceted study which has included adolescent transition needs assessments by providers of adolescents with JIA [20], as well as from patients and families perspectives which have been reported in this issue. This extensive programme has also evaluated the level of provider education regarding transitions, which is obviously an area clearly lacking in medical education and training. By evaluating and researching these different components that make up transitional care, this information provides a more comprehensive picture about the state of transitional care in the UK. It also demonstrates the need for further study of this issue, especially in creating practical guidelines to facilitate implementation of these programmes. It will be interesting to see how all the different viewpoints of transition needs have been incorporated into the transition programme model the BPRG has created.
It is promising to know that this transition programme model will potentially be used throughout the UK for patients with JIA. Many models have been postulated to guide the process and include formulation of general adolescent-focused transition clinics to creating subspeciality or condition-specific transition clinics [21]. Although it is not yet clear which model the BPRG will use with their multicentre transitional programme, the information from this extensive project will provide a better understanding of how to implement a transitional programme on a national level. At this point almost all studies on transitional programmes tend to focus on a single site or multiple individual sites.
Shaw and her colleagues in this issue reveal how the transition needs for patients with JIA and their families are similar to what has been expressed by similar groups in other chronic diseases. Some apparent issues include the recognition of minimal or no preparation for transition, significant differences in paediatric and adult caregiver service models and parental difficulty in letting go [22]. Among the numerous interesting anecdotes provided by patients and families, comments about building and maintaining trust are quite enlightening, especially with regard to having trainees affiliated in clinic care. As most paediatric rheumatology programmes are involved with an academic teaching centre, it is an important revelation that many patients feel their privacy and trust are violated with the presence of medical students or physicians in training and this fact is often overlooked by practitioners.
In spite of all of the advancements in transitional research like the current articles by the BRPG, there is still a paucity of research and literature with regard to practical applications and implementation of transitional programmes, including content evaluation and research methodology. Unfortunately, we still do not have definitions of what are significant outcomes, short and long term, reflective of good transition, nor do we have a clear-cut method to measure these outcomes. We are in the early stages of developing tools to evaluate effectiveness, and it will be useful and prudent to also include ways to study the impact of the development and maintenance of these transitional programmes on health-care costs in comparison with their benefits on future health. All of these practical aspects of transitional care need to be studied further. However, as with any intervention in patients with JIA, full understanding of the impact and efficacy of transitional programmes will require many years of accumulating data from large multicentre national studies like the one that the BPRG has undertaken.
As medications have advanced and more aggressive treatment of children with JIA is becoming standard practice, these patients will potentially be less disabled from their disease, even if it has been long-standing. As these patients become adolescents and young adults they may not necessarily see themselves as being ill or with a disabling condition. This in turn may result in a difficult situation when transfer of care occurs, as these can be the times when adherence to medicines often falters with a resulting flare of symptoms. How is it that we can ensure that these adolescents and young adults with JIA do not lose sight of long-term care goals when they typically are not issues other adolescents must deal with? Obviously, we cannot only rely on the advances in treatment to ensure there are fewer future adverse effects from JIA, and so we must continue using education and other elements of transitional care to help prevent poor long-term prognosis.
Hopefully, future studies will be more optimistic than the current literature about the long-term outcome of JIA. A number of recent reports evaluating long-term outcomes have shown that there continues to be significant disability and morbidity among adults who have had JIA, and how JIA has had detrimental effects on employment and mental health [2326]. Many of these adults expressed how better preparation for future tasks in adulthood could have helped them overcome or cope with some of the obstacles they now face. Whether this can be achieved solely through transitional care programmes by improving patient education and preparation for adult life is yet to be determined. More research in this area needs to be performed and these articles from the BPRG are a good start for understanding the role and impact of transitional care on future outcome.
The authors have declared no conflicts of interest.
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