Ms Anastasia Hughes1, Prof Allison Jaure1, SONG-KIDS life participation workshop participants
1University Of Sydney, , Australia
Biography:
Bio to come
Aim:
To describe the perspectives of patients, caregivers and health professionals on developing a core outcome measure for life participation in children with chronic kidney disease (CKD).
Background:
Life participation is of critical importance to children with CKD, their caregivers and health professionals. Life participation is rarely and inconsistently assessed in trials in CKD.
Methods:
Four consensus workshops were held to discuss the relevance of content, appropriateness, and feasibility of a potential patient-reported core outcome measure for life participation for trials in children with CKD. Transcripts were analyzed thematically.
Results:
172 participants, including 54 patients and caregivers, and 118 health professionals from 16 countries attended. Four themes were identified. Allowing individual interpretation and valuation of life participation included encapsulating key domains of life participation, recognizing varying degrees of achieving participation in different domains, reflecting personal context and values, emphasizing meaningful participation in activities, acknowledging changes over time, and attributing responses to the intervention. Respecting developmental needs entailed developing age-specific measures, considering literacy, utilizing relevant and clear language, using engaging formats, and establishing an appropriate recall period. Capturing broad perspectives included ensuring universal applicability across settings and allowing for proxy completion. Establishing widespread implementation by reducing the completion burden, validating for all stages and diagnosis of CKD, and enabling comparisons across CKD stages were suggested.
Conclusion:
A core outcome measure for life participation in children with CKD should be widely applicable, developmentally appropriate, and allow patients to interpret life participation in their own context, and be psychometrically robust and feasible to implement. Measuring life participation in a consistent and meaningful way across trials can better support patient-centred decision making and outcomes in children with CKD.
Presentation Slides PDF – Click Here