NDT Advance Access originally published online on January 8, 2007
Nephrology Dialysis Transplantation 2007 22(4):988-991; doi:10.1093/ndt/gfl770
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Adolescents with renal disease in an adult world: meeting the challenge of transition of care
Division of Nephrology, Department of Paediatrics, McGill University, Montreal, Quebec, Canada
Correspondence and offprint requests to: Lorraine Bell, MD, FRCPC, Division of Nephrology, Department of Paediatrics, McGill University Health Centre, Montreal Children's Hospital, 2300 Tupper St, Montreal, Quebec, Canada H3H 1P3. Email: lorraine.bell{at}muhc.mcgill.ca
Keywords: adolescence; dialysis; paediatric kidney disease; transition; transplanation
A 20-year-old transplant recipient attends clinic erratically after graduating to adult care. A year after transfer she presents to emergency, weak and vomiting. Her creatinine is 900 µmol/l and she's 4 months pregnant. She admits to stopping all her immunosuppressants because ‘they’re toxic to my baby’. She loses not only her kidney but also the pregnancy.
A 19-year-old transplant recipient, on the honour roll at university and a medal winner at the transplant games, participates in a mentoring program and peer support group for teenagers with renal failure. A year earlier, when he had transitioned to adult care, he was fully responsible for his medical follow-up, knowledgeable about his disease, and communicated with his nurses and physicians with clarity, confidence and a sense of humour.
An 18-year-old college student on haemodialysis is transferred to an adult unit. He fails to appear for treatment. Phone calls home go unanswered. Ten days later, it is learned he died of renal failure.
Adolescent transition to adult care touches almost all of us in clinical nephrology. Outcomes vary widely; some sail through, others flounder. Almost every nephrologist knows at least one young person whose outcome at transfer has been tragic.
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The adolescent experience |
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Picture the world of the adolescent—peer pressure, development of identity, preoccupation with appearance, the joy of the moment, aspirations and dreams for the future. Add to this a serious medical condition. There may be poor self-image, depression and anger displaced onto the disease or treatment. Adolescent risk taking, magical thinking and denial can all contribute to poor treatment adherence. Increased authority from parents and professionals, overprotection and the sick role may lead to learned dependency. In addition to the challenges faced by every teenager, adolescents with chronic kidney disease must rely on drugs or machines for their health or survival, with little margin for acting out or error. Missed treatments can lead to irreversible injury, or even death.
Imagine the impact on an adolescent arriving in an adult dialysis unit, or a crowded transplant clinic, where most patients are decades older, some very ill. Think of the fear and denial it must engender. Adolescents leave behind a nurturing world, where there is active pain management for almost all procedures, time to probe for problems, and tolerance for immaturity. They move into one where autonomy is presumed, punctuality and reliability expected, appointments are brief, and stoicism for discomfort by and large taken for granted.
Adolescents with renal disease are a particularly vulnerable group. Chronic childhood illness may interfere with normal maturation, and suboptimally treated childhood uraemia can impair growth and cognitive development [1]. School absenteeism and missed vocational and social opportunities may reduce employability and diminish self-esteem. Those with both renal failure and cognitive delay face even greater challenges. Key issues are capacity for consent, comprehension of instructions, need for privacy and availability of support services. In paediatrics, determining suitability for transplant assumes every child has a moral standing the same as any other. Will cognitively challenged young adults receive the same access to care as during childhood [2]?
Watson reported the outcome of 20 young kidney recipients following transfer to adult units. A third lost their grafts unexpectedly within 3 years [3]. Comments from the adult centres included: ‘he never turned up for his appointment’ and ‘we didn't have time to chase him’ [4].
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The parents’ perspective |
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TopThe adolescent experienceThe parents' perspectiveThe view from paediatric...Adult perspectiveGrowing up and moving...Reference |
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Previously key players in the treatment of their children and valued as integral members of the health care team, parents may feel relegated to the sidelines after their children transfer to adult care [5]. They may be acutely aware of their sons’ or daughters’ limitations in self-advocacy or cognitive function, and justifiably worried about their ability to cope. The adult physician, unaccustomed to dealing with parents of patients, or concerned about confidentiality, could consider them intrusive. The parents may withdraw, yet there can be real issues where their children need their continued support.
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The view from paediatric nephrology |
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TopThe adolescent experienceThe parents' perspectiveThe view from paediatric...Adult perspectiveGrowing up and moving...Reference |
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Often the paediatric renal team has cared for their patients since birth or early childhood. They may have difficulty letting go, and fear the unknown: the adult model of care, the adult physicians’ understanding of adolescent development and childhood kidney disease, and the availability of resources for their patients with multiple needs. With both professional and research curiosity in the long-term outcomes of their patients, they may worry they will be forever lost to follow-up. Not to be underestimated is the daunting task of summarizing many years of care, sometimes from charts as large as 20 volumes.
Important causes of paediatric renal failure include congenital urological malformations, sometimes requiring complex reconstructive surgery, and inherited disorders, such as cystinosis and autosomal recessive polycystic kidney disease [6]. Their consequences continue throughout the patient's life and necessitate continuing interdisciplinary care, with nephrologists, urologists, gynaecologists, internists, neurologists, gastroenterologists, and others, familiar with these paediatric onset conditions. Uncertainty about continuity of complex multidisciplinary care is a major concern.
A recent survey of transition practices in paediatric dialysis programmes in North America and Europe showed a striking lack of preparedness [7]. At time of transfer, most adolescents could not function independently for such simple tasks as appointment-making and prescription-filling. Even in centres reporting a transition program, patients appeared to be no more autonomous than in those without. Furthermore, the paediatric professionals had minimal awareness of relevant adult resources. Clearly much remains to be done.
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Adult perspective |
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TopThe adolescent experienceThe parents' perspectiveThe view from paediatric...Adult perspectiveGrowing up and moving...Reference |
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Adult nephrologists may be confronted with paediatric conditions and adolescent stages they’ve learned little about. A few may think, ‘adolescents just need to grow up’, others may delight in their youthful energy and optimism, and some may despair that ‘adolescents are bewildering creatures’ and appeal for help.
Adolescents run a high risk of being lost in the system. Variability in maturity may be under-appreciated. Cognitively delayed adolescents may have reasonable social skills and successfully mask their deficits. Short contact time may not uncover their difficulty understanding the issues discussed. Current realities in most adult clinics of high volume throughput, limited funding, and difficulty meeting special needs of many groups, compound the problem. Rapid ‘in and out’ visits don't build rapport or permit time for counselling. Matters of particular relevance, like sexuality, treatment adherence, recreational drug use, piercing and tattoos, all need time to be explored. This is also a period in life when youth may be lured by the romance of travel to exotic destinations, where medical facilities are limited and infection risks significant. Young transplant recipients must be particularly vigilant, in contrast to their more typically carefree peers. Their adolescent sense of invincibility may leave them woefully unprepared, unless these matters are delved into and discussed.
What do adult nephrologists wish for when adolescents transfer to their care? Most would like to see them without their parents present. They hope they will be educated about their disease, responsible for their follow-up and clinically stable at transfer, with their medications optimized. Unfortunately, even with timely transition preparation, this isn't always feasible. There will always be a need for accommodation and collaboration.
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Growing up and moving on: meeting the challenge |
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TopThe adolescent experienceThe parents' perspectiveThe view from paediatric...Adult perspectiveGrowing up and moving...Reference |
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Mutual professional respect is fundamental to successful transition. Key challenges involve bridging the different cultures of care: paediatric, adolescent and adult [8]. Youth with chronic kidney disease should not move to adult centres until they have the necessary skills to function effectively there [9]. Flexibility in timing, based on the adolescent's emotional maturity, disease stability, and availability of developmentally appropriate clinical expertise, is essential. It is implicit that adult and paediatric centres work together to prepare both patients and health care services for appropriate transfer. Reciprocal trust and understanding may be enhanced by adult and paediatric trainees spending time in each others’ centres, and incorporation of transition training into both adult and paediatric residency programs.
A multifaceted approach is crucial to successful transition. Critical components include teaching the adult team about paediatric renal conditions and adolescent development, involvement of a health professional who can help treat and coordinate care, availability of adult interdisciplinary services, and a timely start to the transition process. It may be expensive for individual nephrology centres to have a dedicated transition nurse and social worker, but sharing with other specialties could overcome this obstacle. A modified reimbursement system recognizing the increased time adolescents require should be considered.
Some may question the cost effectiveness of an intensive interdisciplinary approach, but it is critically important to consider the consequences of not having one. The financial impact of allograft loss is substantial, with potentially prolonged disability, loss of employment income and increased health care needs. In addition, graft loss usually leads to a diminished quality of life and increased risk of mortality. No price tag can be placed on the untimely loss of a young person's life. There is a moral and economic imperative to provide appropriate transition services for youth with chronic kidney disease.
Consideration should be given to the development of adolescent/young adult hospital care units and clinics. This could encourage both peer support and mentoring. Although the number of youth transferring to adult centres each year is small, it is cumulative, leading to a progressive increase in the total number of young people in adult centres. Adolescent issues don't magically disappear at the arbitrary ages of 18 or 21 years, but may continue well into the early or mid twenties, particularly for youth with chronic disease.
The older model of childhood healthcare with freestanding paediatric institutions, geographically separate from adult hospitals, hinders smooth transition [10]. The future lies in closer integration of paediatric and adult services, while maintaining paediatric identity and advocacy. The concept of a paediatric ‘hospital within a hospital’ is more relevant, permitting adjacencies between perinatal, neonatal, childhood, adolescent and young adult realms of care. However, a particular challenge is that children with serious renal diseases are generally followed by paediatric nephrologists in a tertiary centre, far from their homes. When they transfer to adult care, they may be dispersed to different adult centres, closer to their places of residence. Transition programmes also need to adapt to these geographic and practical realities. One consideration is for paediatric centres to identify key dialysis and transplant units in different geographic regions, with an interest in young adult patients, and to work with these centres to develop their expertise in transitional care.
More than 20 years ago, Stewart Cameron [11] eloquently expressed the need for continued care of paediatric renal patients into adult life. He reiterated his message in 2001, lamenting the dearth of progress made [10]. There have been a number of publications on transition, but few in the adult literature, little on renal disease, and a paucity of evidence-based research. Long-term follow-up data is needed. Merging of paediatric and adult renal databases to better track outcomes, evaluation of results with and without transition programs, and controlled trials with different types of transition interventions, are areas to be considered.
Excellent models of transition to adult care have been developed for a number of disease groups, such as cystic fibrosis [12–14], congenital heart disease [15,16] and rheumatological disorders [17]; there are also outstanding general guidelines [14,18–20]. These should serve as a starting point; there is no need to replicate that which has already been well-done. The challenge is to adapt these models for adolescents with renal disease, apply and evaluate them. Timely preparation, education, interdisciplinary care, flexibility, and communication are key.
There may be hurdles to overcome, but the rewards will be substantial. Transition is an event to celebrate. For the paediatric team it represents success in the treatment of previously fatal childhood disorders. For adult caregivers, it is an opportunity to look after an inspiring group of patients with the hope, energy and optimism of youth.
Conflict of interest statement. None declared.
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Reference |
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Accepted in revised form: 28.11.06
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