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Published on: June 16, 2014
Development of a Questionnaire to Assess Phosphate Knowledge in Children With Chronic Kidney Disease and Their
Louise McAlister1, Vanessa Shaw2, Pearl Pugh3
1Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Insights
The Phosphate Understanding and Knowledge Assessment (PUKA) questionnaires effectively measure phosphate knowledge in pediatric chronic kidney disease (CKD) patients and their caregivers, aiding future research on adherence and P-levels.
Area of Science:
- Pediatric Nephrology
- Clinical Nutrition
- Health Psychology
Background:
- Hyperphosphatemia is a frequent complication in pediatric chronic kidney disease (CKD).
- Current management includes phosphate binders and dietary phosphate restriction, but adherence remains challenging.
- Assessing patient and caregiver knowledge is crucial for improving phosphate management.
Purpose of the Study:
- To develop and validate the Phosphate Understanding and Knowledge Assessment (PUKA) questionnaires.
- To measure declarative and procedural knowledge of phosphate management in children and young people (CYP) with CKD and their caregivers.
- To provide a tool for future studies investigating the link between knowledge and blood phosphate levels.
Main Methods:
- Questionnaire development involved literature review, clinical expertise, and input from UK pediatric kidney dietitians.
- Content, format, and style were refined through expert consensus, including psychologists, therapists, dietitians, nephrologists, and a Young Persons' Advisory Group.
- The PUKA questionnaires were translated into five languages and piloted for face and content validity with CYP and caregivers.
Main Results:
- The final PUKA questionnaire comprises 37 questions, including 13 knowledge-based items with a developed scoring system.
- Both adult and child-friendly formats were created, with pilot testing confirming understandability.
- In a sample of 44 CYP with CKD stages 4-5 on dialysis and 33 caregivers, over 80% found the questionnaire easy to complete within approximately 11 minutes.
Conclusions:
- The PUKA questionnaires are a valid and reliable instrument.
- They accurately assess phosphate-related knowledge and management experiences in CYP with CKD and their caregivers.
- This tool can facilitate further research into optimizing phosphate control in pediatric CKD.
Introduction:
Hyperphosphataemia is a common complication of paediatric chronic kidney disease (CKD), despite the use of phosphate binders and the numerous strategies employed to reduce dietary phosphate (P) intake. This article describes the development of two self-administered semi-structured Phosphate Understanding and Knowledge Assessment (PUKA) questionnaires. The purpose of these is to assess challenges with adherence and measure declarative nutrition and procedural knowledge of phosphate in children and young people (CYP) with CKD and their caregivers. The aim is to create questionnaires that will be used for future studies investigating the relationship between knowledge and blood P-levels.
Methods:
Questions were generated from a literature review, clinical experience and feedback from a survey sent to UK paediatric kidney dietitians. The content, format and style of the questions were adapted and validated via expert consensus (including a psychologist, play therapist, paediatric kidney dietitians and nephrologists from the international Paediatric Renal Nutrition Taskforce, and our Young Persons' Advisory Group), two caregivers and two CYP. A draft questionnaire was piloted with five caregivers and CYP with CKD to ensure face and content validity. To allow utilisation in a planned multi-centre trial, it was translated into five languages (Dutch, French, German, Italian and Turkish). The final English version questionnaires were used in a sample of CYP with CKD stages 4-5 and on dialysis (CKD4-5D), and caregivers, from three UK paediatric kidney centres.
Results:
From an initial pool of 80 questions, 37 were included in the final PUKA questionnaire. Thirteen were knowledge-based, and a knowledge score was developed. An adult and a child-friendly format were designed. Pilot testing confirmed face validity to ensure the questions were understandable. Forty-four CYP with CKD4-5D and 33 caregivers completed the final English PUKA questionnaires, with over 80% rating it easy to complete. The median time required to complete it was 11:06 min (IQR: 7:22-16:31).
Conclusions:
The PUKA questionnaires are a valid and reliable tool for measuring P-related knowledge and experiences of managing phosphate in CYP with CKD and their caregivers.
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