Activities per year
Methods: We searched MEDLINE, Embase, PsychINFO, CINAHL and the Cochrane Kidney and Transplant registry to August 2019 for all studies that used a measure to report life participation in children with CKD. For each measure, we extracted and analyzed the characteristics, dimensions of life participation and psychometric properties.
Results: From 128 studies, we identified 63 different measures used to assess life participation in children with CKD. Twenty-five (40%) of the measures were patient-reported, seven (11%) were parent proxy-reported and 31 (49%) had both self and parent proxy reports available. Twenty-two were used in one study only. The Pediatric Quality of Life Inventory 4.0 generic module (PedsQL 4.0 generic module) was used most frequently in 62 (48%) studies. Seven (11%) were designed to assess ability to participate in life, with 56 (89%) designed to assess other constructs (e.g. quality of life) with a subscale or selected questions on life participation. Across all measures, the three most frequent activities specified were: social activities with friends and/or family, leisure activities and self-care activities. Validation data in the pediatric CKD population were available for only 19 (30%) measures.
Conclusions: Life participation is inconsistently measured in children with CKD, and the measures used vary in their characteristics, content and validity. Validation data supporting these measures in this population are often incomplete and are sparse. A meaningful and validated measure for life participation in children with CKD is needed.
- chronic kidney disease
- Life Participation
- patient-reported outcome measures
- Chronic renal failure
Alexander J Hamilton (Participant)
Activity: Membership types › Advisory work for/on national or international committee or working group