The UnPiCK study version 1
Research type
Research Study
Full title
Understanding Presentation in Childhood Kidney disease: a Qualitative study
IRAS ID
224324
Contact name
Lucy Plumb
Contact email
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Research Summary:
Childhood Chronic Kidney Disease (CKD) is a major health problem. When kidneys fail, treatments are needed to take over the role of the kidneys. This is either dialysis (blood cleaning) or a kidney transplant: treatments known as renal replacement therapy (RRT). For children, loss of kidney function means a lifetime of RRT. Without this, they would not survive. Dialysis is not a perfect treatment. It can affect a child’s growth, development and quality of life. The best treatment for children offering a chance for normal development is a kidney transplant. It is also the most cost-effective type of RRT for the NHS.In an ideal world, CKD would be identified early. However, 1 in 4 children who end up needing long-term RRT present ‘late’ to kidney doctors. This is defined as within three months of needing to start RRT. Due to the severity of their disease, these children miss out on treatments to delay dialysis. They cannot plan for a transplant before it is needed. Other research suggests ‘late presenters’ are more unwell.
It’s not fully understood what causes late presentation or if it can be prevented. This study aims to understand more about this problem and whether it is possible to detect children earlier. To do this, we will invite 18-20 children and/or their carers to take part in an interview. During the interview, we will ask them to describe how they found out they had a kidney problem and what effect this has had (phase 1).
We will also interview 8-12 West of England GPs to explore their understanding of childhood kidney disease and how it may present (phase 2). GPs are the main point of contact for many parents and are seen as the ‘gate-keepers’ to specialist services. Interviewing GPs will help to identify barriers to diagnosing childhood CKD.
Summary of Results:
Childhood chronic kidney disease (CKD) is an important health problem with long-term effects. If detected early, treatments can help slow kidney function decline. In the UK, 1 in 4 children with kidney failure first see a specialist when their kidney function is already very low. By identifying factors linked to late presentation, we can begin to address them. This study aimed to understand the experiences of children with CKD who present late to specialist care.For this study, late presenting children, young people, and their parents were interviewed about their experiences. The sponsor for this study is the University of Bristol. Children, young people and parents helped to design the study and its information. Patient representatives helped to prepare for interviews by sharing their experiences.
In total, 7 children and 15 parents from 13 families took part in the study. Each person took part in a single interview.
From this work, different patterns of help-seeking were identified. In many cases, families described symptoms that were ‘hidden in plain sight’. Some reported symptoms that were present but did not at first raise concern. Some families described symptoms that were there for a while before seeing a doctor. Others made many trips to the doctor before referral. Different factors affected how families identified a problem. Knowing what symptoms were was difficult with no knowledge of kidney disease.From this work, increasing public awareness of kidney disease may help families to interpret symptoms. Understanding symptoms and healthcare use linked to severe CKD can help us to develop advice for healthcare professionals on when to test for kidney disease in children.
This work will be written up for publication and shared with children and their families. We would like to say a massive thank you to the children, young people, and their families who took part in this study.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
17/WM/0310
Date of REC Opinion
9 Oct 2017
REC opinion
Further Information Favourable Opinion