Qualitative research with patients and caregivers of patients with PIK3CA related overgrowth spectrum: content validity of clinical outcome assessments.

Kimberly RaymondSusan VallowCory SaucierKristi JacksonMichelle K WhiteAndrew LovleyDenise D'Alessio

Published in: Journal of patient-reported outcomes (2022)

This study provided valuable information from patients about PROS, supporting the content validity of the COAs, with recommended revisions. COAs are easily understood by persons with PROS and caregivers and are appropriate for measuring symptoms and disease-related impacts across diverse PROS syndromes in clinical trials.

Keyphrases

end stage renal disease
clinical trial
ejection fraction
newly diagnosed
chronic kidney disease
palliative care
peritoneal dialysis
prognostic factors
depressive symptoms
patient reported
sleep quality
double blind
phase iii