Professor Stephen Marks, MD MSc MRCP DCH FRCPCH is Professor of Paediatric Nephrology and Transplantation at University College London Great Ormond Street Institute of Child Health. He is clinical lead for renal transplantation and Director of the National Institute for Health Research Great Ormond Street Hospital Clinical Research Facility at Great Ormond Street Hospital for Children NHS Foundation Trust. He is currently theme lead for high intensity early phase clinical trials as well as PPIE for NIHR GOSH Biomedical Research Centre and chair of the British Association for Paediatric Nephrology and UK Renal Registry Audit and Informatics committee having previously been the chair of the National Health Service Blood and Transplant Paediatric Kidney Advisory Group. His research continues to date in the fields of renal transplantation (including innovative drug trials concerning new anti-rejection therapies and assessment of children post-renal transplantation), systemic lupus erythematosus and vasculitis. He is on the editorial board for “British Journal of Renal Medicine” and is associate editor for “Transplantation”, “Pediatric Nephrology” and “Pediatric Transplantation”, which are the journals of The Transplantation Society, the International Pediatric Nephrology Association and the International Pediatric Transplant Association (IPTA) respectively. Having been chair of the Publications and Communications Committee, he is now a Councillor of IPTA.
What are the psychosocial factors influencing access to kidney transplantation and transplant outcomes for children? A Systematic Literature Review
Ji Soo Kim1,2,3, Jo Wray2, Stephen D. Marks1,3.
1Paediatric Nephrology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom; 2Centre for Outcomes and Experience Research in Children’s Health Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom; 3Great Ormond Street Institute of Child Health, University College London, London, United Kingdom
Introduction: Kidney transplantation is often seen as the gold standard treatment for children and young people (CYP) with End Stage Kidney Disease (ESKD). However, psychosocial factors have been cited as a barrier to accessing a kidney transplant, although it is unclear what these are.
Through a systematic literature review, this study explores the range of psychological and social factors that influence how soon a CYP with ESKD accesses a kidney transplant. This includes factors that influence kidney transplantation outcomes and factors deemed important to patients and their families in terms of their QoL.
Material and methods: We included quantitative, qualitative and mixed-method studies that were peer-reviewed and included primary data. Medline, PsycInfo, CINAHL and Web of Science were searched for papers published in English between January 1964 and September 2020.
Results: After removing duplicates, a total of 6235 studies were retrieved through database searches, hand-searching references and consulting experts in the field. Fifty-seven studies remained after full-text screening against inclusion criteria. There were 46 quantitative, 8 qualitative and 3 mixed-method studies. Most study designs were retrospective longitudinal registry studies. Factors influencing access to transplantation included maternal education, social support network and therapy non-adherence. Race, socioeconomic status and geographic remoteness were often cited as contributory factors. Although factors such as anxiety, depression and avoidant coping strategies were described in the literature in relation to patient family experience and wellbeing, evidence linking these with accessibility to, or outcomes of, paediatric kidney transplantation was limited.
Conclusions: Longitudinal and prospective studies are needed to fully assess the relationship between psychological factors and the relationship with social factors and a CYP’s subsequent access to, or outcomes after, kidney transplantation.