Great Ormond Street Hospital, Great Ormond Street, London
Introduction
In today's health-care arena there are increasing demands from an ever-enlarging number of specialities for ever-more resources. One of these specialities is that of adolescent medicine, bridging the gap between the worlds of paediatrics and adult health-care. Unfortunately adolescent medicine in Europe tends to be fragmented and largely unco-ordinated [1,2]. With increasing numbers of adolescents with chronic illnesses surviving into adulthood, one aspect of adolescent medicinetransitional careis in urgent need of development and research. With the current velocity of medical and surgical advancement, this area is likely to become an even greater challenge to both paediatric and adult specialists in the next few years. In spite of this, a survey of health authorities in the UK by the first (recently appointed) director of adolescent medicine in the UK revealed only 9.8% of health authorities had purchaser specifications on adolescent care facilities [1].
One of the methodological difficulties of research in this area is how to define adolescence and a wide range of definitions is used. The start of adolescence is often defined as the onset of puberty and the end being marked by the completion of the majority of the tasks of adolescence (Table 1). This is reflected in the use of broad age ranges e.g. 1020 years, WHO; 1421 years, American Academy of Pediatrics.
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What is transitional care?
Transition in health-care is defined as a multifaceted, active process that attends to the medical, psychosocial, and educationalvocational needs of adolescents as they move from child-oriented to adult-oriented life-styles and systems [3]. Transition is a process which ideally should begin on the day of diagnosis [3]. In practice, this usually means that when the condition is recognized as a chronic illness, a plan is developed in which goals for independence/self-management are outlined on an approximate time schedule with revisions made throughout treatment. Educational issues are integral to any transitional care plan and must incorporate issues surrounding the transition to secondary school which coincides with the early adolescent period and which is potentially influenced to a lesser or greater degree by the presence of a chronic illness. In early adolescence the prospect of eventual transfer to adult health-care is sensitively incorporated into this plan, addressing the needs of both the young person and his or her family. Transitional care must be carefully co-ordinated and planned [4]. A survey of service providers in the rehabilitation, education and medical care of children in the United States showed that lack of planning for transition was second only to financing as the most common reason for failure of moving successfully into an adult-oriented system [5]. Health professionals must remember that in addition to their chronic illness and the transition to adult health-care, adolescents must accomplish the tasks of adolescence (Table 1) in addition to negotiating two further major transitions (Table 2
). These tasks and transitions are interdependent and the transitions will not be successful if the tasks are not accomplished.
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It is important to emphasize the difference between transfer and transition. Transfer is an event within the transition process when the young person moves from paediatric into adult care. The timing of transfer depends on many factors and not just chronological age, e.g. maturity, disease activity, compliance, independence, adolescent readiness, availability of adult speciality service etc.
Evidence from literature of need and benefit of transitional care
The impact of chronic illness in adolescence highlights the need for co-ordinated, multidisciplinary care, bridging the traditional divides between health, education, social services, and voluntary agencies. Personnel involved in the care of young people with chronic illnesses must understand the intricacies and reciprocal influences of chronic illness on the patients' development. Chronic illnesses can influence physical development, e.g. cause growth retardation or delayed puberty. Conversely, physical development can influence the chronic illness, e.g. insulin resistance at puberty [6]. Similarly chronic illness can influence cognitive development, e.g. via drug side-effects, school absence, pain, depression, fatigue; conversely, the stage of cognitive development will influence such aspects as communication and disease education. Finally chronic illness can influence the patients' psychosocial development in terms of the effects on the development of their self-concept, the family, peer relationships, sexual identity, and conversely psychosocial development may influence such aspects as adherence to therapy, risk-taking behaviours.
Much of the literature on transitional care for adolescents with chronic illnesses acknowledges that many of the issues are generic irrespective of the nature of the condition. There are, however, disease-specific issues that will vary in character and impact, particularly as regards such variables as life expectancy and stability of the disease course. There are also many similarities, e.g. acute exacerbation of the chronic condition, complex and long-term treatment regimens, multiple clinic visits, periodic hospitalizations, and aversive hospital procedures, all of which have potential negative social ramifications. Vocational issues, self-advocacy at home, school and in the health-care setting, self-care, peer support are important to all young people, whatever the illness. Several authors have advocated this non-categorical orientation toward chronic illness and disability, which has been increasingly accepted by psychosocial investigators [79]. The development of generic adolescent units also indirectly supports the concept that the common needs of adolescence unite sick young people more than the particular needs of their diseases separate them [1,10,11].
Recent studies of physically disabled young people in the UK have reported the quality of medical care declines after transfer to adult services [12]. There is also evidence to support the benefits of co-ordinated transitional care programmes in several chronic illnesses, e.g. improved follow-up [13] (juvenile idiopathic arthritisJIA, USA), improved disease control [14] (diabetes, Finland), improved quality of life [15] (diabetes, Australia), [16] (cystic fibrosis; USA). Although the importance of transition for a young person with chronic renal failure has been previously highlighted in the literature [4], there are no outcome studies of the effect of transitional care in this disease group.
Barriers to successful transition
The barriers to successful transition can be considered at several levels:
The adolescent
The young person may be reluctant to move to an adult clinic and leave the team who have looked after him or her for many years and have become the patient's friends. Their disease may be severe and they may be less mature than their peers. They may still be dependent on their parents, be non-compliant with their medication, and have yet to become independent in their own health-care.
The parents
The parents of a young person with a chronic illness may similarly be reluctant to move to a new clinic with a whole new set of unfamiliar staff, leaving behind their old friends in the paediatric clinic. They may be unwilling to let go of their previously dependent child. They also may have become aware of the paediatrician's lack of confidence in their adult counterparts.
The paediatric nephrologist
Many doctors become attached to their patients over the years and may be reluctant to let them go. They may lack confidence in the adult team's ability to look after young people with childhood onset diseases.
The adult nephrologist
Many children with chronic illness are now surviving into adulthood, but adult providers may never have looked after these diseases and may lack confidence in their abilities to manage them appropriately. Local guidelines developed by joint working parties of adult and paediatric specialists are potentially useful to address this. Adult specialists may never have received training in child and adolescent development, in the impact of chronic illness in this age group, or in generic health issues. Consultation dynamics are also very different from the adult setting, and recognition of the evolving role of the parent in the care of the young person is integral to the process.
The delivery system
Time and financial constraints are obvious hurdles in the current economic climate. Other potential barriers include availability (and geographical location) of adult specialists, suitable clinic space, administrative transfer of case notes and X-rays between centres, etc.
Areas for potential generic service development
Since many of needs of adolescents with chronic illnesses are generic and not all disease-specific, service development can also be generic and be shared between specialities and their respective multidisciplinary teams at a local level. A few of these areas are discussed below:
Self-advocacy
Effective advocacy is a major aspect determining the quality of life for individuals with chronic illness. For the teenager with a chronic illness there is both advocacy by the parent on their behalf and the development of advocacy by and for themselves, i.e. self-advocacy. Over-protectiveness from parents, teachers, and/or health professionals may result in delay in the development of self-advocacy.
The self-esteem of the young person is another important factor, with lower levels reported in young adults with chronic illnesses, e.g. end-stage renal disease [17], JIA [18]. Self-esteem refers to the perception the individual possesses of his or her own worth. It is a composite of an individuals hopes, fears, thoughts and views of who he/she is, what he/she has been and what he/she may become [19]. High inverse correlations between self-esteem and depression as well as anxiety have been established [19].
Development of self-advocacy is integral to the successful achievement of independence from parentsone of the major tasks of adolescence. Self-advocacy and the development of an internal locus of control fosters resilience in young people [20,21] and should be encouraged and supported, whether it be in the health-care system, education, the workplace, or life in general. In practical terms in the health-care setting, this may include patient-held records, self-medication, interviewing the older teenagers initially alone and then with the parent etc. Evidence from primary care reveals that teenagers see the GP on their own by the age of 1415 years [22]. Having a full understanding of their illness and being involved in medical decisions was rated as important by over two-thirds (69%) of young adult survivors of a paediatric dialysis and transplantation programme, and as the most helpful coping strategy overall by 36% [23]. An important aspect of the development of self-advocacy is therefore disease education. Such education programmes must be appropriate to the age and development of the patient. In support of this, Berry et al. [24] reported that adolescents answered questions about their chronic illness at the concrete operational stage of cognitive development, despite the expectation that the majority of them would function at the normal operational level, reflecting adult levels of understanding and thinking [24]. Another finding from this study was that of a significant level of inaccuracy and misunderstanding about the causes of their disease and its symptoms, despite the fact that many were long-term clinic attendees [24].
Vocational issues
Despite the tremendous success story of dialysis and transplantation in terms of life expectancy, lower levels of employment have been reported in adult survivors of a paediatric dialysis and transplant programme [23]. Unemployment was associated with lower educational performance [23], which in turn has been reported to be related to poorer self-esteem [17]. Increased school absence is another contributory factor reported in some chronic illnesses [25]. Lower levels of employment have also been reported in JIA, but in contrast, unemployment did not correlate with educational achievement [26]. When Reynolds et al. [23] studied the effect of this increased unemployment in the renal patients, they reported that it was not associated with increased work and/or income-related stress compared to controls. The authors postulated that this was due to the early stage of their working lives and/or careers, low or realistic expectations, or supportive employers. Prospective studies are needed to determine the aetiology of unemployment in these young people. One explanation for the disparities may be related to the multifactorial concept of vocational readiness in chronic illness.
Vocational readiness has been described by vocational rehabilitation specialists in North America [3,18] and several centres have established programmes of vocational counselling and career development specifically for young people with chronic illnesses, e.g. the Adolescent Employment Readiness Centre (AERC), Children's National Medical Centre, Washington DC. Vocational readiness is related not only to educational achievement but also to prior work experience, expectations of the young person, his/her family and their health professional (see below), psychological factors, e.g. self-esteem [17], extent of knowledge about career services and community resources, and society's attitudes towards disability. All these aspects need to be considered by health professionals and careers counsellors of young people with chronic illnesses.
Preliminary data from a national UK study of what adolescents with a wide range of chronic illnesses want report the following: early and appropriate career counselling, mentoring and information about benefits (personal communication, B. Beresford, University of York, 1998). Young people with chronic illnesses are not very different from their peers in these matters. Job security and future employment are included in the top five concerns of healthy 1516-year-olds in the UK [27].
Generic health issues
Health professionals are only one of many sources of health-related information accessed by adolescents. However, Carrol et al. [28] reported that adolescents with chronic illness in the USA reported more age-related concerns such as alcohol and drug issues, menstrual periods, sexual health, worry about height and weight etc. than their healthy peers. In the area of sexual health, chronically ill adolescents become sexually active at rates comparable to healthy teenagers [29] and sexual health issues should be sensitively addressed. Approximately half of young adult renal survivors said they would have welcomed some counselling or advice about sexual matters or relationships, including contraception, fertility, and pregnancy [23]. Seeing the young person independently from the parent may help provide the privacy for such discussion with the assurance of confidentiality. In a study of adolescents in primary care, confidentiality was their major priority when questioned as to the most important attributes of an adolescent-friendly practice [22].
Encouraging general exercise for all young people remains an important area of health promotion. Greater levels of exercise are associated with well-being and long-term functioning in patients with chronic conditions [30]. Health professionals involved in the care of these young people must ensure that such generic issues as described above are being addressed by someone, whether it be by primary or secondary health-care services, in view of their impact on their chronic illness.
Role of parents
The triangular relationship of childparentprofessional in paediatric care must evolve into the linear relationship of young adultprofessional in the adult world. This is a gradual process with potential for difficulties and is an area conducive to anticipatory guidance for all involved, as the parents learn to let go of their previously dependent child. Expectations of parents for their child with chronic illness are important to address as possible impediments to this process, as they may be too high or too low. When 100 adolescents with chronic illness and/or physical disabilities were studied, their lack of career maturity and paucity of early work experience related to their parents' view that the mean age for first work experience should be 16 years or older [31]. This is compared to reports that 50% of healthy 13-year-olds are involved in work experience outside their homes [32]. Overprotective parenting was one reason given for their unemployment status by young adult survivors on the EDTA Registry [33]. Parents therefore need to be supported and encouraged to ensure that their son/daughter attains the functional living skills and develops autonomy and self-advocacy skills equivalent to those of his/her healthy peers. Parents need to be made aware of the resources available in the community, and supported as they learn to let their child move into independent adulthood. The positive affirmative role of the family must not be forgotten in the attempts to engender increasing adolescent independence. Family connectedness, family role models, family concern for the well-being of the child, and autonomy at home are all factors identified as fostering resilience in children and should be encouraged and affirmed [20,21], especially at this time.
Summary
Transitional care for adolescents with chronic illnesses and/or disabilities is an area ripe for research and investigation for both paediatric and adult specialists in collaboration with colleagues in community and primary care, secondary and tertiary education, social services, and voluntary organizations. Professionals must work closely together in conjunction with the young person and his/her family to provide the co-ordinated, uninterrupted, medically excellent, age-appropriate and developmentally appropriate transitional care that these young people deserve to help them grow up into independent and fulfilled adults who happen to have a chronic illness.
Acknowledgments
J. McD wishes to thank Dr Clive Ryder for his comments during the preparation of this manuscript. J. McD also wishes to thank the Royal College of Physicians and Surgeons of Glasgow for awarding her a travelling fellowship to the Adolescent Employment Readiness Center, Washington, DC in 1998, and Professor Patience White and the staff of the AERC for their valuable support and training in this area.
Notes
Correspondence and offprint requests to: Dr Janet E. McDonagh MD MRCP, Consultant Paediatric and Adolescent Rheumatologist, Great Ormond Street Hospital NHS Trust, Great Ormond Street, London WC1N 3JH, UK.
References