Transition care: Making the move to adult nephrology services

Providing an adequately resourced transition service that is individualised and person-centred
offers these young people the best opportunities for their future

Young adulthood can be a high-risk and vulnerable stage of life, even for those who are not experiencing episodes of ill-health. For young people living with chronic kidney disease (CKD) and end-stage kidney disease (ESKD), the risks are significant, and pose a range of challenges for the young adult themselves, as well as paediatric and adult nephrologists caring for them. Children most typically move to adult services in Ireland between the ages of 16 and 17 years, which encompasses adolescence, often coincides with their school transition year, and occurs at a stage of rapid brain development; all of which and more will affect patient outcomes.

Adolescence – defined by the World Health Organisation (WHO) as between the ages of 10-to-19 years¹ – represents a very important time in a young person’s life, with rapid changes in physical, emotional, sexual, educational, and social development.

The brain undergoes multiple physical changes, such as synaptogenesis, changing electroencephalographic patterns, and evolving metabolic functions. Adolescence is an untimely period for disease manifestation, with disease processes impacting normal development and normal development impacting attempts to treat disease. It is well recognised that when young people with chronic disorders transition into adult services, there is a potential for varying outcomes, many of which result in adverse events around the time of transition, or later events culminating from the challenging transition phase. Providing an adequately resourced transition service offers young people living with kidney disease the best opportunities for their future.

Young people and CKD

The diagnosis of kidney disease, particularly progressive kidney disease that will lead to the need for kidney replacement therapy and transplantation, impacts on every dimension of a young person’s life. The impact is also felt by parents, carers, siblings, and the extended family. The demands of treatment regimens are arduous and the burden of care is high. The younger population have considerably different needs from older adults with CKD, even those who have been newly diagnosed, and it is important that as health professionals, we are attuned to these risks and maximise opportunities to reduce them.

Young adults differ from both young children and older adults in terms of their physical, psychological, intellectual, and emotional development; they experience and see the world differently. The aetiology of CKD in the younger population also differs from that of the adult CKD population; with complex congenital urological conditions, rare diseases, and genetic kidney diseases all seen more frequently in this cohort. There is also a higher incidence of haemolytic uraemic syndrome.

In addition, with improved detection and treatment of childhood cancers, haematological diseases, congenital heart disease, and intestinal failure, there are increasing numbers of young patients graduating into adulthood with CKD. These patients undoubtedly see and experience a different world from that of their peers for a variety of reasons. Understanding these reasons is paramount in providing care that navigates and overcomes the array of challenges CKD brings for young people and adolescents.

Challenges during the transition period

A lifetime treatment course for those with ESKD will typically include periods of dialysis punctuated by one or more kidney transplants.² Children on haemodialysis have a reported 55-fold increased mortality risk compared to the healthy population of a similar age,³ and ESKD carries a heavy range of physical symptoms. Many psychological, emotional, and socioeconomic complications also accompany the disease. We need to recognise the unique challenges of young adults with CKD on neurocognition, age-related changes in immune activity, and suboptimal concordance during the transition process, among many other issues, because young adulthood is a time in life where trajectories are set for future success or failure.⁴ Effectively managing the transition between child and adult services can profoundly influence these trajectories.

Understanding key challenges faced by young adults living with kidney disease is the first step. Disruption to school and education, chronic illness, poor growth, altered body image, renal replacement interventions, and invasive medical procedures all contribute to considerable challenges for children and families burdened by the disease process. Psychological support includes addressing concordance issues, anxiety and stress management, improving coping skills, and extends to support for parents and siblings.

Medication concordance is generally poorest among adolescents. Reports suggest concordance rates are as low as 50 per cent among adolescents living with long-term illnesses – leading to disease progression, premature loss of renal transplants, increased morbidity, mortality, hospitalisation, and growth abnormalities.⁵ Adolescents and young adults also have a higher rate of non-attendance to appointments, where monitoring and interventions can be planned. Following kidney transplantation, young adults also have higher rates of admission via emergency departments, often as late presentations with multiple complications that make recovery more challenging. In many instances, transplanted organs are also placed at high-risk of failure due to these issues.

In the UK, up to 35 per cent of young adults lose a successfully functioning kidney transplant within 36 months of moving to adult services.^6,7 This tragic loss of well-functioning allografts will result in a return to dialysis and present additional complications for future transplantation. Premature loss of a kidney transplant is also associated with increased mortality, increased morbidity, increased mental health problems, and decreased quality-of-life.⁸ After moving to adult care, it is not uncommon for young patients to attend clinic alongside significantly older and sicker adults with multiple comorbidities. Young adults report adult clinics as contrasting enormously with their experience in the paediatric sector and can find the experience potentially very frightening. If their first experience of attending adult services is suboptimal, it is less likely they will want to return.

Generally, the risky behaviours often seen in adolescence that affect sexual health are a concern among this entire age-group. Many parents and clinicians assume that young adults with chronic illness are not sexually active, however, research has noted that risks around sexual health are actually increased in young adults with chronic illness, with many appearing to use sexual experimentation as a counterpoint to offer a form of normalisation. Early sexual activity is associated with increased risk-taking behaviour, increased risk of unplanned pregnancy, and sexually transmitted disease. These problems are confounded in renal disease, where risks associated with pregnancy are significantly higher and teratogenic drugs, such as mycophenolate mofetil and angiotensin converting enzyme (ACE) inhibitors are commonly used.

Health is a known key contributor to a vast array of psychological and social outcomes that affect this population too. Young adults on dialysis report higher levels of depression and anxiety,⁵ tend to perform less well in work and education, and overall, report an inability to fully integrate into a ‘normal’ life. Health is clearly key to holistic wellbeing and poor health in adolescence has also been shown to disrupt educational trajectories and many other later life chances.^4,6,9 The Economic and Social Research Institute (ESRI) report published in 2021 Growing up in Ireland: The lives of 20-year-olds – Making the transition to adulthood, describes key socioeconomic aspects of the young adult’s transition into adulthood, including their economic status, accommodation, financial circumstances, relationships, sense of agency, and civic engagement.¹⁰ These all can be impacted by kidney disease as many young adults with CKD have been ill throughout childhood and into adolescence, and can struggle to achieve higher educational qualifications, employment opportunities, and financial stability in adulthood. Patients living with CKD are less likely to go to university and more likely to be unemployed and continue to live with their parents. Achieving social independence is just another of the myriad of challenges these patients face.

Brain development in young adulthood

Our increasing knowledge of the complexity of the human brain has helped the nephrology and other medical communities to identify, understand, and manage some of the risks and challenging behaviours young adults with chronic conditions face and exhibit. We now recognise that the human brain continues to mature well beyond adolescence and into the 20s, with the frontal lobes – which are involved in planning and impulse control – among the last areas to mature. The cortex, the executive part of the brain, is also slower to reach maturity. It deals with self-awareness and analysis of consequences, as well as planning and behavioural choices. These changes will hugely impinge on decision-making, perceptions, and ultimately, behaviours and choices.

These stages of life and brain development can manifest in negative ways, like greater risk-taking and higher susceptibility to peer pressure, and in positive ways, such as an increased learning capacity.¹¹ The developing brain may fail to recognise the major long-term consequences of risky behaviours, a lack of self-care, and non-concordance with medical advice and treatment regimes.

In 2017, UNICEF published The Adolescent Brain: A second window of opportunity to describe how the young adult brain has a greater sensitivity to social evaluation as well as emotional interactions.¹² This provided insight on how this period of neurological evolution could actually be seen as a unique opportunity to promote health and wellbeing and not just a time where negative trajectories are being set. For clinicians, promoting so-called ‘resilience’ and stress  management strategies during adolescence is a unique opportunity for empowering health and wellbeing during a successful transition into adult services. By providing an evidence-based, personalised, and intricate approach, this phase of development may be ideal to help young people with chronic illness develop parity of esteem and empower them with the tools needed to manage their own healthcare and life needs.

Need for transition

The problems encountered during transfer of care are not unique to nephrology or a particular healthcare system. They have been well recognised in multiple countries throughout the world. These issues that commonly arise during the transition period traverse all socioeconomic backgrounds and require a holistic, intricate, and multidisciplinary approach. Transition can be defined as a purposeful, planned process for adolescents with chronic physical and medical conditions as they move from child-centred to adult-orientated healthcare. The process should address the medical needs, psychosocial needs, and educational/vocational needs of an individual. There is strong evidence that a seamless transition from paediatric to adult services through integrated, specialist care improves clinical outcomes.⁹ An appreciation of the clinical differences between paediatric and adult medicine is a critical step in understanding how to manage a transition clinic.

There remains a growing need for well-designed transition programmes to ensure successful integration of young adults into adult society. Three key simple features to an effective transplant transition care programme have been described:⁴

1. Early start to graded transfer of responsibility from parent to adolescent;

2. Engagement of adult nephrology team;

3. Use of checklists to guide the transition (such as the readily implemented ‘Ready, Steady, Go, and Hello’ survey).¹³

Transition should be a guided, educational, therapeutic process individualised to suit the needs of the young person and their family, rather than an administrative event. With dedicated transitional care involving a complete multidisciplinary team (MDT), including psychology, social work, pharmacy, nurse specialist support, and other MDT members, patients are likely to feel more confident about entering the adult health system and are less likely to fall between the gaps. A multidisciplinary approach to transition has also been shown to result in better disease control, concordance, and attendance.¹⁴ Among paediatric colleagues, there is a recognition that many adult specialties are overwhelmed, with some encountering fewer multidisciplinary team resources. Most clinicians recognise that aside from the patient, the most important member of the team is a dedicated, empathic, clinical nurse specialist who has built relationships with the patient and their family (often from a very young age).

Ultimately, the goal of independent management of the young person’s healthcare can be achieved with adequate resources and a patient-centred transition. As well as promoting optimal quality-of-life, this can also potentially reduce disability in the long-term, leading to a reduced burden on the health service as well as the patient and their family. Most importantly, effective transition will facilitate the young people of Ireland with kidney disease in reaching their full potential.

As nephrologists, we are guided by the individual patient, their condition, and their family. Many young people will benefit from transitioning before they finish school. At a later age, they may be more likely to have left the family home, live more independently, and are encountering a lot of other life changes. However, recent literature suggests that for some patients, transitioning at a later age should be considered.⁴ Having a robust transition programme allows flexibility in tailoring the process toward the individual needs of the patient, as opposed to a generic age and stage for transition.

Conclusion

ESKD is fortunately uncommon in young adults, but does occur.¹⁴ Progressive kidney disease has impacts on every aspect of a young person’s life. The implications are felt by parents, carers, siblings and the extended family, and the effects extend to the young person’s physical, psychological, emotional, social, and educational life. Preventive strategies for optimising CKD management are key to reducing the burden on young patients living with kidney disease. Providing an adequately resourced transition service that is individualised and person-centred offers these young people the best opportunities for their future. Understanding the complexity of brain development and finding ways to utilise it to promote healthy behaviours is paramount.