Two Consultant Paediatric Nephrologists at Children’s Health Ireland at Temple Street, Prof Atif Awan and Dr Susan McAnallen, who is also post-CSCST RCPI ASPIRE Fellow in Transitional Nephrology, presented on renal-related issues in children and young people. Prof Awan began the session by examining the history of paediatric renal transplantation in Ireland, while Dr McAnallen’s presentation, ‘Mind the gap’, highlighted problematic issues during the transition from child to adult services, and ways to overcome them. Both speakers acknowledged the need for and value of a “good team” in providing and developing care to this patient group, giving recognition to those working within the nephrology discipline, as well as donors and their families.
Prof Awan provided an overview of the last 20 years of paediatric transplant in Ireland, looking at the patient journey, demographics, outcomes, and complications. He talked about the transplants that took place between 2003-2023, detailing that 40 per cent of these transplants were from live donors and 60 per cent from deceased donors. He stated the average age of transplant in Ireland is 9.4 years, and the smallest child to be transplanted to date was only 8.8kg. Describing the patient journey for those who are not transplanted before they need renal replacement therapy, Prof Awan said that “the average time spent on dialysis is 24 months”, before explaining that congenital abnormalities of the kidney and urinary tract remain the primary cause of renal failure in paediatrics, followed by nephrotic syndrome and cystic kidney disease, respectively.
As well as immunosuppression and guidelines for frequency of clinic visits post-transplant and HLA-antibody monitoring, Prof Awan also talked about viral surveillance and post-transplant lymphoproliferative disease. He told his colleagues how despite a low rejection rate in Ireland, non-concordance remains the “number one” cause of transplant failure. Other causes of allograft loss to date have included donor disease, ischaemia, calcineurin inhibitor toxicity, infection, and disease recurrence, while an elevated creatinine remains the leading indication for post-transplant biopsy.
Prof Awan concluded his insightful presentation with an emphasis on the data showing that one-third of allograft failure takes place within 36 months of patients transitioning into adult services, leading the way for Dr McAnallen’s presentation.
Beginning with a case study to demonstrate its intricacy, Dr McAnallen described the unique nature of paediatric nephrology, the aetiology of renal failure in this group, and the complexity of the patient journey. She outlined her own interest in the field and “why care for young adults can be different”. Attendees heard how “children with kidney failure typically have a lifetime treatment course that includes periods of dialysis punctuated by one or more kidney transplants”.
Dr McAnallen also explained that those whose first transplant was from a deceased donor had higher mortality rates at all time points compared with those whose first transplant was from a living donor. She then acknowledged that “despite the fact that paediatric, young adolescent, and adult patients receive the highest quality donor kidneys, adolescents and young adults have the highest rates of graft failure of any group”, before discussing the transition process into adult services and ‘the gap’ between them. She defined the transition as “the anticipated, co-ordinated process of movement from child-centred to adult-orientated healthcare”. Referencing a recent review published by the late Prof Donal O’Donoghue, Dr McAnallen highlighted how it is often poorly co-ordinated, delayed, and associated with high rates of allograft loss and a return to dialysis.
She also acknowledged that many of the difficulties associated with this transition are not unique to nephrology and are evident within other specialties and long-term illnesses, highlighting data from the Economic and Social Research Institute’s 2021 report Growing Up in Ireland: The Lives of 20-Year-Olds – Making the Transition to Adulthood, which showed that 16 per cent of all 20-year-olds reported having a longstanding condition or illness. She also told attendees how the number of young patients transitioning from paediatric to adult renal care has progressively increased due to improved management and patient survival rates of 85-to-90 per cent.
Describing the challenges associated with the transition, Dr McAnallen talked about the still developing adolescent brain and the rapid change in physical, emotional, sexual, educational, and social development that takes place during adolescence, describing it as “an untimely period for disease manifestation – with disease impacting normal development, and the normal challenges of development impacting attempts to treat disease”.
She detailed how the brain is not fully mature until age 25, and discussed recent brain imaging research showing that areas involved in executive functions, such as the prefrontal cortex, develop more slowly during adolescence, and in ways that relate to risk-taking, peer pressure, and learning.
Dr McAnallen told attendees how data suggests that concordance rates among adolescents and young adults with long-term illnesses are as low as 50 per cent, and attributable to issues such as a lack of understanding, fear, a desire to feel ‘normal’, apathy, mental health and cognitive difficulties, as well as the teenage brain. Dr McAnallen described how this population also have a higher degree of non-attendance to appointments and admissions via emergency departments, often leading to late presentation with complications, which subsequently makes recovery more challenging.
“It is estimated that young people lose up to 60 per cent of their school contact time if on three-day a week haemodialysis prior to transplant,” she said, as she addressed socio-economic effects of renal disease on young people. “This impacts negatively on their educational and social development, and post-transplant children can struggle to catch up on the schooling they have missed.” She explained that patients living with CKD are less likely to go to college and more likely to be unemployed and living with their parents.
“Finding a vocation is a key task of adolescent development. There remains a growing need for well-designed transition programmes to ensure successful integration of young adults into adult society,” she said.
“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.”
Advocating for a transition process that addresses medical, psychosocial, and educational/vocational needs, Dr McAnallen concluded by promoting a multidisciplinary team approach consisting of nephrologists, advanced nurse practitioners, youth workers, psychologists, physiotherapists, and other professionals.
Moving to the later stages of life, Dr Robert Foley, Nephrology Specialist, University of Minnesota, US, addressed what he termed the “difficult to decide” question of when to start renal replacement therapy. The title of his presentation ‘Very low, but stable GFR: Dialysis or no dialysis?’ Referencing guidelines, evidence from randomised controlled trials and observational data, and bias in longitudinal studies, Dr Foley noted a “need for better trials” in answering this question, stating that controlled trials are difficult, but possible. He discussed quality-of-life and survival, and outlined findings that dialysis was associated with a lower risk of death in the first three years than conservative management, but also an increased risk of hospitalisation and reduced life satisfaction.
Concluding, Dr Foley said that efforts to improve shared decision-making for the treatment of advanced chronic kidney disease still need better background information, telling attendees that the “big data approach” allows novel analytical methods that simulate trials and can produce useful clinical tools for shared decision-making.
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