108 Investigating the modifiable psychosocial variables influencing access to and outcomes after kidney transplantation in children – a study protocol. (30th November 2020)

• Record Type: Journal Article
• Authors: Kim, Ji Soo; Wray, Jo; Marks, Stephen
• Is Part Of: Archives of disease in childhood. Volume 105(2020)Supplement 2
• Page Start: A37
• Page End: A37
• Publication Date: 2020-11-30
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2020-gosh.108
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Introduction: Kidney transplantation, compared with dialysis, is often seen as the gold standard in optimising health, reducing mortality and improving quality of life in children with End Stage Kidney Disease (ESKD). We recently surveyed 12 out of 13 UK paediatric nephrology centres on their transplantation plans for all children registered with ESKD. The most commonly cited factors delaying kidney transplantation in these children were: disease-related (36%), availability of a suitable donor (27%) and the child's size (20%). In 19% of children, psychosocial factors were listed as a barrier. Some factors, including psychosocial, may be modifiable through local or national intervention. To inform future interventions, further study is needed to explore the range and nature of these psychosocial factors. Aim: To investigate the psychosocial factors that influence access to and outcomes of kidney transplantation among children in the UK. Methods and Analysis: This is a prospective multicentre (13 UK paediatric nephrology centres) mixed-methods study with QUAL-QUANT and QUANT-QUAL phases. First, we will use thematic analysis to review interviews conducted with NHS professionals, children with ESKD and their families that explore these psychosocial factors. Next, validated questionnaires that measure these psychosocial factors will be distributed to the wider UK cohort of pre-transplant children with ESKD and their families. They will be followed up to 2 years regardless of whether they do or do not receive a kidney transplant. Clinical data will be prospectively collected from local hospital notes and registry data (UK Renal Registry and NHS Blood & Transplant). Families with outlier results will be invited for further interview to explore their findings.