Adaptation and evaluation of PRO-Kid (patient-reported outcome measure for the assessment of symptoms burden in pediatric chronic kidney disease) for children aged 2-7 years.

BACKGROUND

Children with chronic kidney disease (CKD) and kidney failure face significant symptom burden, which must be considered in clinical practice. We previously reported the development and validation of a patient-reported outcome measure (PROM) for the assessment of CKD symptoms and its impact in children aged 8-18 years (PRO-Kid). This study aimed to assess the validity of modified PRO-Kid tools for children aged 2-7 years.

METHODS

The PRO-Kid questionnaire was modified for younger age groups. For children aged 5-7, the Likert scale was replaced with emojis. For children aged 2-4, the questionnaire was completed by a parent proxy. Parents of children aged 2-4 and children aged 5-7 with stages 3-5 CKD including those on dialysis, were recruited from five pediatric nephrology centers in Canada. Semi-structured cognitive interviews were performed during which participants completed the modified PRO-Kid tool and discussed their experience with the questionnaire. Interview notes were collected for content analysis.

RESULTS

We recruited twenty-one participants, 11 in the 2-4-year age group, and 10 in the 5-7 years age group. Analysis shows that the modified PRO-Kid was easy to complete and understand, and it captured the most relevant symptoms. Age groups diverged with respect to the 7-day recall period, with the caregivers of the 2-4-year age group preferring a longer recall period. The replacement of a Likert scale with emojis in the 5-7-year age group was well received and understood.

CONCLUSIONS

The modified PRO-Kid tool is acceptable as a PROM for assessment of symptoms related to CKD for 2-7-year-old children.