68 - Patient-Reported Outcomes in Glomerular Disease: Focus on the Musculoskeletal System (PROGRESS)

Children and young adults with glomerular disease aged 5-30 years were recruited from two centers (Children’s Hospital of Philadelphia and Nemours Children’s Health) and through the NephCure Kidney International newsletter. Exclusion criteria were: chronic dialysis, solid organ transplant, systemic lupus, and malignancy. Participants and/or their guardians completed questionnaires electronically through REDCap to ascertain patient-reported outcomes of fracture, physical function and pain. PROMIS® item banks for three domains with computerized adaptive testing (CAT) were utilized: Physical Activity, Pain Behavior, and Pain Interference. For participants 8-17 years old, both self-report and parent proxy instruments were administered.

Results:

Table 1 shows characteristics of the 80 participants enrolled to date. 32 (40%) participants reported pain, and 19 (24%) reported muscle or joint pain. 15 (19%) participants reported a history of fracture. Table 2 shows PROMIS measure T-scores by whether participants reported pain, and Table 3 shows PROMIS measure T-scores by whether participants reported musculoskeletal pain. For those reporting pain and musculoskeletal pain, the median and inter-quartile range for pain behavior and pain interference T-scores excluded the median scores of the general population for pediatric measures and excluded 50 for adult measures.

Conclusion(s): There is a considerable burden of pain and musculoskeletal pain experienced by children and young adults with glomerular disorders.