Development of a measure of caregiver burden in paediatric chronic kidney disease: the Paediatric Renal Caregiver Burden Scale

To inform the development of a measure of caregiver burden for carers of children with chronic kidney disease, interviews were conducted with 16 caregivers and 10 renal healthcare professionals. A pool of 97 items generated from interviews was reduced to 60 items following review. A piloting exercise provided evidence for the usability, readability and relevance of items and informed further adaptations resulting in the 51-item Paediatric Renal Caregiver Burden Scale. Further to assessment of its psychometric properties, it is hoped that that the Paediatric Renal Caregiver Burden Scale will serve as a useful measure of caregiver burden in paediatric chronic kidney disease.