Queen Elizabeth the Queen Mother Hospital, St Peter's Road, Margate CT9 4AN, UK
What are you going to be when you grow up, and how will you make it happen?
You can make it. There's always someone worse off than you.
These two quotations (with my italics), taken from an article on career counselling for teenagers with arthritis [1], aptly describe the positive encouragement with which we must support our young patients with arthritis if they are to make a successful transition into the different world of adult health care. Whether they leave the paediatric age group with severe or minor disabilities, they are likely to be worse off than their peers in some aspects of their health and development. We must ensure that appropriate transition services are available for adolescents with arthritis.
The accompanying audit of rheumatology services for adolescents and young adults in the UK found a paucity of provision of special services, highlighting the gap between paediatric and adult services [2]. Why should we consider setting up clinics for the 1625 yr age group? What evidence is there that teenagers with arthritis benefit from specialist transition services?
McDonagh and colleagues, on behalf of the British Paediatric Rheumatology Group (BPRG) [2], propose areas for further research and development. A national, collaborative, multicentre project is about to start, funded by the Arthritis and Rheumatism Council (ARC) to identify the needs of adolescents with juvenile idiopathic arthritis (JIA) and develop programmes of transitional care. This article reviews the background to the development of adolescent health services, and expands on the potential benefits to young people which will result from dedicated clinics for young people with rheumatic diseases and a planned transition process.
Adolescence literally means becoming adult. The concept of adolescence was created only during the 20th century [3]. Prior to that children were expected to move from childhood to adulthood as quickly as possible, being encouraged to behave as adults as soon as they left school and started work. With the sociological changes brought about by the introduction of state schooling, the rising school-leaving age and, later, rising adult unemployment came an increase in concern about managing the health and education of young people. Teenagers are encouraged to attain further qualifications by continuing to higher education through college or university, and therefore do not enjoy the independent aspects of being adult, such as income and authority. However, they must consolidate their identity, achieve independence from their parents, establish new love relationships outside the family and find a vocation [4]. Indeed, in discussions on their hopes for the future, adolescents with disabilities are particularly clear that they want to find a job [5].
Adolescence is a relatively brief phase of life, occurring anywhere between the ages of 10 and 19 yr, depending on gender and biological and social differences. There are many qualities recognized in adolescents which are to be admired, including vitality, high ideals, faith in their own ability, and courage to follow their best beliefs [6]. However, adolescence brings with it various problems, including those associated with
Many of the health problems of adolescence are related to these social changes rather than biological disease. Emotional and behavioural difficulties form the largest cause of disability among children of school age [7]. Behavioural problems may be related to bullying, and initiatives to establish a supportive environment in schools and promote self-esteem are of importance.
As well as the usual problems of adolescence, our patients have to cope with their arthritis, the effects of which may have caused delayed growth and puberty, as well as emotional immaturity with dependent behaviour [8, 9]. Any of these factors may lead to low self-esteem and poor body image, which in turn may lead to either passivity or rebelliousness [4]. All appropriate management strategies should be employed to normalize growth velocity and development as well as to provide extra support in traversing adolescence.
There has been increasing interest in developing adolescent health services, particularly in North America and Australia. None of the medical Royal Colleges in the UK has developed a policy on transition [10], although guidelines have been published [11]. All adolescents require health treatment different from that required by both adults and children, and most will respond with maturity when shown respect. At some stage they will begin to take responsibility for their own health. Whereas the majority will still ask their parents for advice on health problems, they will also consult friends, television, books and magazines [12]. Knowing that anything discussed will be confidential was ranked by teenagers as the most important factor in a survey of primary care services [12], and they are entitled to absolute confidentiality from age 16 yr [11]. Other important factors cited by the teenagers were ease of obtaining advice on the telephone, access to written information on adolescent health issues and the friendliness of health centre staff [12].
However, families are still likely to be the strongest support for the patient and must be included in the planning of the transition process. Following a long period of reliance on their familiar and respected paediatric team, adolescents with chronic disease may feel very mistrustful of the unknown. Adult services tend not to provide the family-centred approach of the paediatrician, and may also not provide the quality and intensity of care that the young person has been used to. Adult physicians who do not regularly treat children may be less likely to involve parents, who then feel they are redundant in the decision-making process [111].
It is also important that the paediatricians have complete confidence in the adult physicians, and that no element of mistrust is conveyed to the adolescent. Attendance at joint clinics with both the adult and paediatric teams is one of the ways of easing the transition [13]. The general practitioner (GP) may provide the only continuity of care for the family at this time, although when an adult rheumatologist experienced in paediatric rheumatology has been running the children's service the disruption will be much less, and this was identified as a positive factor in the recent audit [2].
The timing of transition should be carefully planned, preferably at a time when the disease is stable [13]. It is important to avoid an abrupt change at a time of crisis. The young person could perceive this as a punishment or rejection by the previous carers [10]. If the transition is badly planned, the patient may take the opportunity to drop out of hospital follow-up at this stage. Barriers to transition have been identified as funding and lack of access to key staff rather than family or adolescent resistance [14].
Patients at the time of transition may be a particularly mobile population because of changes in education or jobs when they leave school, and if they are living in temporary rented accommodation. In addition, they may fail to register with a GP. The introduction of smartcards carrying minimum data on their disease would be extremely useful in advising any new doctor taking on their care. Carrying of individual patient treatment records with more information on drugs, dosages and blood test results should also be encouraged for this age group to improve communication between patient and carers, and young people might find the use of electronic records very acceptable.
Although inpatient treatment is less commonly needed, adolescents should be offered a choice of where they wish to be cared for. Following an audit of adolescent demands and needs at the Royal Gwent Hospital in Newport, a young person's ward for ages 1119 yr was built, and a charter for adolescent patients was developed. The charter for each patient states their rights to privacy and confidentiality, to be given information about their medical condition, and to have access to space for study or recreational activities [15]. Attention to these basic values should become part of the transition between child and adult health services, and is particularly important for patients with chronic diseases.
The transitional needs of adolescents and young adults with arthritis were discussed in this journal in 1996 [16, 17], and guidelines for the transfer of young people with chronic physical disorders from paediatric to adult clinics were published in the same year [11]. It is thus disappointing that the recent audit of rheumatology services for adolescents and young adults in the UK by McDonagh et al. on behalf of the BPRG [2] highlights the still limited provision for this special group of patients.
There has always been optimism that early and effective treatment of children with arthritis will improve the outcome with regard to serious disability. At district level there may still be patchy services for children with rheumatic disease. Development of a local paediatric rheumatology clinic is likely to improve early diagnosis and treatment, although research data are lacking. Outcome studies from large referral centres disappointingly continue to show the significant functional and psychological morbidity associated with juvenile arthritis in the UK, including poor employment status despite successful tertiary education [1820].
Setting up a clinic specifically for the 1625 yr age group has been shown to concentrate referrals and highlight the number of patients who could benefit from this service [21]. It is particularly helpful for the young person to avoid transfer direct from a paediatric to an adult clinic if the majority of patients attending are elderly. In the Newcastle region, Helen Foster started a weekly multidisciplinary young adult clinic by transferring patients with JIA, but has also been receiving approximately 10 new referrals in this age group each month since her service started [21].
The number of seriously disabled adolescents or young adults at district level will thankfully be small. However, this should not impede the development of a clinic dedicated to the care of young people with rheumatic diseases. It is essential for the adult rheumatologist involved to have expertise in the patterns of disease occurring at different ages and the special problems of those young people whose arthritis began in childhood [18, 26]. We must ensure that specialist registrars in rheumatology are offered training in paediatric rheumatology so that there are local adult specialists to care for these young people effectively as they grow up. Collaboration between the paediatric and adult teams, for example in undertaking long-term follow-up studies, will improve the links and encourage the trust needed between the two. Similarly, the other members of the rheumatology multidisciplinary team involved with the 1625 yr age group, including specialist nurses, physiotherapists and social workers, should have had training with younger children with arthritis and their families.
The case mix in an adolescent/young adult clinic will include:
Running a clinic for small numbers of patients allows more time to be allocated to address patients' anxieties about their disease. Coping with the fatigue of chronic disease can be particularly difficult for the teenager who has a busy school schedule, trying to keep up with their peers and then finding they are lacking in energy to complete their homework as well as socialize [22]. Adequate time for discussion on how to rearrange their schedule and pacing themselves with writing assignments proves beneficial [23]. Even children who have been long-term clinic attendees may carry inaccuracies and misunderstandings about their disease into adolescence.
An unhurried service will also be very helpful for those confronting the diagnosis of arthritis for the first time. Diagnosis in adolescence is thought to lead to a feeling of lack of control and difficulty adapting and coping with functional problems [18]. Pain amplification syndromes may present in the early teenage years [24]. They can be very disabling and management is very time-consuming. The first step is to establish trust between patient and carer [24], and there will be more time for this in a small clinic. A comprehensive review of functional and psychological issues for all patients at the time of transition will prove invaluable [25].
Patient education should emphasize the need to take medication regularly, particularly disease-modifying drugs, rather than to rebel against all forms of treatment or consider experimenting with stopping treatment when they are feeling well [23]. Educational information about their disease, written especially for this age group, could be backed up by input to a local support group of young patients. This would be very valuable in helping the new sufferer to understand the importance of learning how to cope with the diagnosis and take responsibility for his or her own care. Basing some care in the community, such as group therapy or educational sessions run by the clinical nurse specialist for those with similar diagnoses, may be less threatening than extra visits to the hospital.
Health professionals should certainly start planning for transition in early adolescence or even at the time of diagnosis [10, 11, 16, 27]. Existing programmes may be subspeciality based, focusing mainly on the condition, or more broadly based, focusing on the adolescents themselves [14]. Several models of transition have been described [27]. General issues, such as instruction on job awareness, however, should begin at 12 yr of age and all patients should be encouraged to seek work experience as soon as allowable. Education authorities should inform the social services of the proposed school-leaving age, and an assessment of needs should be made, preferably by a social worker with skills in helping adolescents with special needs [11].
The depth of services provided in the Adolescent Employment Readiness Centre set up by Dr Patience White in Washington, USA, is impressive [1]. Employers, parents, teenagers and the medical community rather than health professionals run these programmes. The following topics are discussed at the centre, and some of these should be included in a planned transition service: individual assessment, individual career counselling, job search training, facilitation of career exploration activities, job placement assistance, academic advice, college selection and planning, teen workshops, parent counselling and parent workshops. A proposed government policy to coordinate careers advice and employment agencies in the UK, backed up by mentors for adolescents, would be particularly helpful for those entering the job market with disabilities.
If the health-care services have few patients going through transition, there is all the more need to have a defined structure. Areas to assess relate to aspects of the patient's arthritis, concerns about other medical problems and what to do in an emergency, as well as issues about access to further education and disability allowances. It would thus be sensible to draw up a list of guidelines for use at transition to ensure no areas are overlooked. An example of a proforma that may be used for auditing the transfer from paediatric to adult services can be found in the appendix of the book edited by Kurtz and Hopkins for the Royal College of Physicians [11]. A single key worker should be the reference point during transition [11], and it has been suggested that a nurse coordinator or clinical nurse specialist is ideally suited to run a transition programme, facilitating communication among team members [9, 10, 28].
The family unit has many stresses and strains over a lifetime and coping with a young person with arthritis is likely to throw the family mobile off balance [29]. Studies of the impact of childhood arthritis on the family are lacking in consistency, probably because many are small in size and retrospective [30]. Literature on the adolescent also suffers from small sample sizes, but in addition the age ranges studied differ and satisfactory control groups are often lacking [26].
Psychosocial adjustment is not always related to the severity of disease in the affected child or teenager. However, in one study of young adults with JIA, the more disabled sufferers or those with active disease certainly scored higher on the anxious preoccupation subscale of the Mental Adjustment to Arthritis instrument, indicating concern or worry about their arthritis [18]. When young people present with chronic idiopathic pain, the effects of family problems, including parental distress, marital disharmony and other stressful life events, may also be profound. Interventions to alleviate parental distress are thought to have beneficial effects on the behaviour of children with chronic diseases, including arthritis [31].
In assessing health status in children, the parent usually reports on the functional issues and quality of life. Whereas parents and children may tend to agree on the level of the young person's functional difficulties, there may be a poorer correlation for psychosocial items [32]. In adolescence, information must be obtained directly from the patient [32]. The most appropriate measurements of health-related quality of life and the best time to move to self-reporting by the adolescent have been discussed recently [33].
Adult patients with arthritis are known to lose valued activities from almost every domain of life relating to difficulties with mobility, shopping, hobbies and sexual interests [34]. The consequent frustration and depression will often affect the patient's quality of life. Passive coping strategies lead to poor psychological functioning [35], whereas active strategies include seeking support from others and replacing a valued activity with an alternative [34]. Adjusting to the diagnosis and learning how to live with arthritis, including strategies to cope, may eventually lead to mastery [36].
How much more should we seek to support our young people with arthritis in both coming to terms with the diagnosis and learning how to live with it? The recent review of services in the UK suggests that particular problems to address include:
Individuals will be ready to consider taking responsibility for their own disease and treatment at different ages during this period of transition. They should be encouraged to contribute to their health care and to prioritize their needs.
The conclusions reached by the audit of rheumatology services for adolescents and young adults should be implemented under the coordination of the BPRG to complement existing paediatric and adult rheumatology services in the UK. Adult rheumatologists should be involved in the development of adolescent services. Research focusing on the needs of adolescents, looking not only at functional outcomes but also at health status and quality of life, will provide valuable material for the future planning of transition services. The proposed study funded by the ARC in conjunction with the Children's Chronic Arthritis Association and the Lady Hoare Trust should lead in time to significant improvements in UK services for adolescents with rheumatic disease.
References