IMPACT - Improving Phosphate Control in children with CKD. Version 1
Research type
Research Study
Full title
Development of effective resources for phosphate education for children and families with chronic kidney disease: hearing the patient voice
IRAS ID
312541
Contact name
Vanshee Patel
Contact email
Sponsor organisation
Great Ormond Street Hospital for Children NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
When the kidneys do not work well a mineral called phosphate (P) accumulates in the body. High blood P levels weaken bones and damage the heart. Patients with chronic kidney disease (CKD) and those on dialysis are advised to follow a controlled P diet and take medications to decrease P absorption. Many children and young people (CYP) with CKD struggle to follow this restrictive diet and take the medication, and international data report a high prevalence of raised blood P. This suggests that current educational strategies are not effective, but there has been little research to understand the barriers and facilitators to adherence to dietary advice in CYP and their caregivers. \nThis study will investigate the reasons for poor adherence, and the perceived value of current P educational material (PEM), by inviting the views of up to 50 CYP with CKD and caregivers. \nA wide range of PEM will be evaluated by an established international group of dietitians and nephrologists, five patient representatives, a psychologist and a play specialist. An illustrative sample will be selected and presented to CYP or caregivers through multiple virtual focus groups (semi-structured format). CYP and caregivers will complete a questionnaire designed for this study, to assess their understanding and knowledge of aspects of P control. During the focus groups, feedback will be sought on the relevance, style, and comprehension of the selected PEM, along with discussions about what helps or hinders dietary adherence. Information from the focus groups and questionnaires will be used to understand preferences, opinions and learning needs of CYP. Accordingly, new PEM will be co-designed with our CYP and families, using a combination of written, pictorial, audio, video or digital material as appropriate. We hope this approach will improve P control, leading to better bone and cardiovascular health in CYP with CKD. \n
REC name
South West - Central Bristol Research Ethics Committee
REC reference
22/SW/0150
Date of REC Opinion
1 Nov 2022
REC opinion
Further Information Favourable Opinion