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Some form of structured transition to adult orientated services is required for many young people with chronic disease
A dolescence is a time of great change for all young people. As independence increases, adolescents may have difficulties in their relationships with adults and may engage in risk taking behaviour. Young people are often not registered with a general practitioner and seek medical services only when in an emergency.1 These issues also affect many youngsters with chronic disease but may have a more serious impact on future health and psychosocial functioning. Neurological conditions can have a profound effect on an adolescent’s self esteem and sense of identity,2 and many young people with neurological disabilities do not have the social skills to seek out and maintain services themselves.3
Transition to adult care has become a major issue across the paediatric subspecialties and will continue to present a challenge to all health care providers over the coming years.1 With improved care, diseases of childhood are becoming diseases that begin in childhood and continue into adult life.4,5 It has been reported internationally that the transfer to adult services for children with all chronic illnesses has been overlooked,6–8 despite increasing acknowledgement of the need.5,9,10 Although scattered local services are being developed in a piecemeal fashion, there have been no national initiatives to date in the United Kingdom11 and little rigorous evaluation of these services has been published.12,13
A distinction needs to be made between the physical transfer to adult services and the process of transition from the paediatric to adult settings. Neither paediatric nor adult services may be appropriate to the needs of adolescents.2 Adolescent medicine is a relatively new specialty in the United Kingdom, although more established in north America and Australia.1 Many paediatricians in the UK and elsewhere continue to see young people with chronic illnesses well into adult life.1,6 This may be because no services are available, because paediatricians are unaware of adult service provision, or because they chose to continue providing care.
WHAT IS THE SIZE OF THE PROBLEM IN NEUROLOGY?
Around 70% of young people with cerebral palsy will survive to adulthood,14 more than 50% of children with spina bifida,15 and over 25% of boys with muscular dystrophy.10 Prevalence rates for adolescents with a neurodisability are shown in table 1. As these figures show, many people with neurological diseases previously seen as paediatric are surviving to need care as adults.
WHY IS TRANSITION TO ADULT SERVICES IMPORTANT?
A recent consensus statement produced jointly by the national representative bodies of paediatricians, physicians, and family doctors in the USA states that “the goal of transition in health care for young adults with special health care needs is to maximise 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.”16 In order to achieve this goal, the following need to be considered.
Planning transition gives the message to young people that living into adulthood is a realistic expectation,10,17 enhances their sense of responsibility and self esteem,10 and reinforces the notion that they are a valued member of adult society.18 Young people have the ability to adapt to new situations, and the transition to adult services can be seen as a part of the rites of passage into adulthood.19
Adult orientated care—
Adult services deal more commonly with some aspects of care, such as sexual health, and may manage them better.17
If transition is not discussed with young people they may unilaterally decide not to continue seeing the paediatric team and be lost to all follow up.17
Research and audit—
Adult clinics for rare conditions such as inborn errors of metabolism, where patients previously did not reach adult life, can also provide an opportunity to collect information on long term prognosis, monitoring, and complications, and to evaluate best practice.20
PROBLEMS WITH THE PROCESS OF TRANSITION
The paediatric team. Paediatricians may be fearful of “letting go”, particularly if they feel adult services are inferior to those they have provided.
The patient. The young person may feel abandoned by the medical team, which they may have known for most of their lives. It takes time to develop trust and confidence in a new doctor. Adult physicians may have a different style of consultation which young people may find threatening.
The family. Parents can feel threatened by the adult environment as they lose some control and some are emotionally dependent on the paediatric services.
The adult team. Adult physicians may have had inadequate training in paediatric conditions. They tend to be subspecialists and may be less used to multidisciplinary working. Young people may feel distressed and alienated if seen in clinics where the majority of other patients are elderly and sick.
MODELS OF TRANSITION
Three main models for transition have been described.1,6 The first involves transfer from a paediatric subspecialist to an adult subspecialist; the second is primary care based and is coordinated by the general practitioner; the third uses a generic adolescent health service, of which there are few in the United Kingdom. We do not know, however, which model works for which group of young people.1,10 Patients with diseases such as Duchenne muscular dystrophy are unlikely to survive beyond their early 20s, and a specific young adult clinic may be most appropriate here. Other neurological diseases have a range of life expectancies and complete transfer to an adult service is required.1 Local arrangement of services may also determine the most appropriate model.19 Although the focus of published reports is on outpatient services, transition must also include provision of appropriate inpatient services.9
After transition, services provided should be of equal quality and intensity.21 A period of concurrent care is ideal,17 although this may not be possible in all settings. Both paediatric and adult providers should be involved in the coordination and monitoring of transfer.17 A formal transition checklist including notification of key services, collation of notes, and so on can be useful.1 Clinical nurse specialists may be the best people to coordinate the transition period.1 The process should always include primary care.
PLANNING THE TRANSITION
Effective transition should include the following aspects.
Timing. The approach should be carefully planned over a period of some time.6 Timing should be individualised to take into consideration the disease stability, the person’s developmental maturity, and their educational and social situation.6,17,18 Transfer during a period of crisis or with little warning is less likely to be successful.17 Although optimum time for transition will differ between individuals, a target transfer age may be helpful to work towards.1 Readiness for transfer can be assessed using validated questionnaires looking at the young person’s knowledge of their disease, its management, and how much of the management the youngsters themselves take responsibility for.3,13
Multidisciplinary team. Full discussion should be had with the family and young person when planning transition18 and all involved professionals need to be included in the process.
Evaluation. The service should be evaluated including user feedback.
THE EVIDENCE FOR SUCCESSFUL TRANSITION SERVICES FOR YOUNG PEOPLE WITH NEUROLOGICAL CONDITIONS
Like some other chronic conditions, many neurological diseases have multisystem involvement and sequelae, so multiprofessional care is essential. Some young people will be profoundly handicapped, and employment, personal care, and social and financial support will be required in addition to medical care. This makes the transfer to adult services even more complex. There have been few studies published evaluating the transition process, and those that have were very small.
Two studies have looked at the experiences of young people where no formal transition process was in place. Warnell22 looked at a small number of families of young people with epilepsy who had previously been patients at a children’s hospital. Children had transferred to adult care between 16.5 and 19 years. Seven of 10 said the transition was difficult. Predominant experiences were sadness at leaving a trusted medical team and fear of the unknown. However, eight of 10 were mostly or very satisfied with their adult neurologist and three out of 10 felt the transition was a positive move. Positive features of the adult service were less hectic and crowded waiting rooms and shorter waits. Stevenson et al compared the experiences of two age groups of young people with cerebral palsy and healthy controls.14 Employment, leisure, and social life were compared, as well as use of health and social services. The families highlighted physiotherapy as the most important health service. Epilepsy was a common reason for medical intervention, and most adolescents in the younger group had attended hospital in the previous year. Obtaining aids and equipment was difficult for the older age group. In contrast to the younger group, where the person named as knowing most about their condition apart from parents was their paediatrician, the older group said that there was no-one with this knowledge.
There have also only been a few studies which have evaluated a formal process. Sawyer et al described a pilot of the transfer of spina bifida patients to an adult service.23 The process included formation of a committee comprising professionals from both adult and paediatric services, as well as consumer representatives. They found that the compilation of a comprehensive medical record took around four hours per patient. Pretransfer interviews with the patients revealed anxieties about leaving trusted professionals and meeting new specialists with whom they had to build a relationship. There were specific fears regarding whether adequate information would be transferred. Post-transfer interviews found dissatisfaction with time delays in the family being contacted by the adult institution, a belief that follow up arrangements and reviews were insufficient in the adult service, and uncertainty about future medical care. Four of the 10 chose to continue to see a paediatrician funded through private health care.
Appleton et al and Smith et al have described clinics for teenagers with epilepsy in the United Kingdom set up in 1991 and 1997, respectively.24,25 One of the aims of both clinics was to facilitate the efficient transfer of patients to adult services. Both are staffed by a paediatric neurologist, an adult neurologist, and a specialist nurse. Appleton found that the teenagers’ main concerns were around employment, driving, and sexual health, all of which may be poorly dealt with by a purely paediatric service. Smith noted that only 14% of the girls on anticonvulsants at the time of consultation at their teenage clinic were taking folate supplements, a situation they were able to rectify in their clinic. They also felt that the clinic’s deliberate emphasis on directing the conversation towards the teenager rather than the parents was important, and the structure of the clinic, with a separate room for physical examination where they could discuss issues with the young person without the parents present, was also very valuable. Neither of these studies reported on patient satisfaction with this model or on longer term outcomes such as treatment adherence and attendance at adult clinics following the setting up of the service.
There is evidence that adolescent patients are not ideally served by paediatric services and that some form of structured transition to adult orientated services is required for many young people with chronic disease. There has been little published on the evaluation of services for young people with neurological conditions transferring to adult medical care. The reports that have been published do not provide the evidence enabling one to conclude whether a formal medical transition leads to a better outcome for all young people, whether one model is better than the others, or whether different models are needed for different groups of patients. Further work needs to be done on evaluating the different models so that these questions can be answered.
Some form of structured transition to adult orientated services is required for many young people with chronic disease