Young Adult Clinics—Turning a Dream Into Reality

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Managing young adult patients aged 16 to 30 years with end stage renal disease (ESRD) is a challenge for the whole multidisciplinary health care team. Approximately 50 percent of this age group in any adult kidney unit will have transitioned from pediatric nephrology practice (see the article by Kaufman in this special section), while the remainder will present initially to adult services. The proportion presenting through pediatric care will vary according to local practice, as transfer to adult care can occur at different ages ranging from 16 to 25 years. The combined young adult ESRD population will make up approximately 2.5 percent of the total ESRD population in any one unit, and there is a real danger that such a small subset will be lost in the sea of much older dialysis and transplant patients. Frequently, individual young adult patients will be geographically and socially isolated from peers on dialysis or with functioning kidney transplants.

Adolescent and young adult patients are at a critical point in their educational, social, physical, and psychological development that will shape their future life. The presence of ESRD can greatly impede success in education, relationships, and independent living, which can result in a damaging reduction in self-esteem and clinical depression.

Young adulthood is a time of increasing independence and tremendous peer pressure to conform to the “model” young adult, which may lead to a lack of commitment to their chronic illness manifesting as nonadherence with medical appointments, medication regimens, and dialysis attendance. This may result in a 2- to 3-fold increased risk of premature transplant failure with the potential difficulty of future transplantation due to sensitization. Dialysis nonadherence may lead to recurrent hospitalizations due to uncontrolled fluid overload, hyperkalemia, and increased mortality.

Young adult patients share little in common with most of the older patients within any kidney provider service and frequently, the multidisciplinary staff managing their care have difficulty engaging with this population. In feedback from questionnaires and focus groups young adult patients would prefer to attend outpatient clinics with young peers, have continuity of care with key health care professionals with whom they can relate, and have flexibility of health care delivery. An effective approach is to establish a young adult clinic for all 16- to 30-year-old patients with ESRD, providing an opportunity for peer interaction and support in addition to the traditional health care team. It may prove difficult to encourage young adults to interact with one another in the traditional hospital outpatient setting, as many individuals will leave once their individual medical consultations are completed. One approach to overcome this barrier is to consider scheduling the young adult clinic in a more youth-friendly environment within a community center, such as a sports club or college facility, rather than the traditional hospital outpatient facility. In this setting it will be possible to establish a young adult patient youth-club environment which will help catalyze peer interaction. Initially this may prove difficult in any adult renal unit as there will be a small number of patients who may have limited interests in common beyond their renal failure and associated treatment. Peer interaction can be catalyzed by the involvement of a youth worker or other key team member who could engender a youth club environment and ensure collective participation. In the optimal setting, team activities—such as a pool competition, bowling, or traditional board games—can break down any social barriers and encourage peer interaction amongst the patient group. This rapidly leads to comparative discussion of their experiences of kidney disease from both positive and negative perspectives. Once introduced, the peer interaction will spread beyond the young adult clinic environment through social networking vehicles such as Facebook or simple text messaging.

A key to the success of a young adult clinic is a youth worker or equivalent key team member. Most hospital teams will not be very familiar with the role of youth workers who tend to work in community settings with young people aged 12 to 25 years. Their roles have been predominantly developed supporting young adults with drug-dependence problems, HIV disease, and physical disabilities. The unique and key roles of youth workers include building self-esteem, providing individual support to young adult patients, and helping with social and personal development, since young adults with ESRD frequently have delayed development of social skills due to the isolating nature of their illness.

It is important to identify a small team of key multidisciplinary health care staff who will run the young adult service. This team should ideally comprise a key physician(s), nurse practitioner(s), and youth worker. Limitation in the number of key individuals will facilitate continuity of care and more readily instill trust amongst the young adult patients. It is essential to have a close and integrated link with the local pediatric nephrology team to insure seamless integrated transition of young adult patients transferring from pediatric to adult care. Ideally the young adult service will have customized access to psychological, dietetic, pharmacologic, and social worker support. It is important to recognize that the needs of young adult patients differ from the typical older ESRD patient as they are embarking into the adult world and often require support to optimize educational, employment, and social development.

Adult nephrology units should develop a strategy for a comprehensive young adult service which should have a young adult clinic as a core component. In addition, other useful components would include community outreach by the youth worker who can visit individual young adult patients on a one-on-one basis in the community to provide targeted individual support. This will frequently involve helping to build confidence and self-esteem but may involve provision of support in other ways, such as helping to improve immunosuppression adherence. Provision of separate social events such as group dining, activity weekends, and participation in the National Transplant Games can build a true group identity and substantially raise individual self-esteem. The result is the emergence of several key young adult patients who can act as mentors for new patients entering the clinic. If you are 17 years old and facing the prospect of ESRD the best person to give you advice on how dialysis or transplantation will affect your life is an experienced young adult patient, and frequently not a health care worker.

It will be a challenge to establish a young adult service as it requires a culture change within your nephrology unit to allow grouping all the young adult patients into a dedicated young adult service. Senior clinicians may not readily see the potential benefits and feel they are perfectly able to manage the care of such individuals. It is important to explain that existing health care models for this age group immerse a small number of young adult patients into a sea of old patients stifling any peer interaction and leading to peer isolation. Young adults with ESRD have a long future ahead of them and we should ensure we provide additional targeted support to allow them the opportunity to maximize their future potential and minimize the tragic risk of increased morbidity and mortality from nonadherence and a lack of engagement with their chronic illness and health care.

Notes

[1] Dr. Harden is affiliated with the University of Oxford, Oxford, UK.

References

1. Watson AR. Hospital youth work and adolescent support. Arch Dis Child 2004; 89:440–442.

2. Crowley R, et al. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011; 96:548–553.

3. Harden PN, et al. Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ 2012; 344:e3718

4. Bent N, et al. Team approach versus ad hoc health services for young people with physical disabilities; a retrospective cohort study. Lancet 2002; 360:1280–1286.