2024
Pain and Health-Related Quality of Life in Autosomal Dominant Polycystic Kidney Disease: Results from a National Patient-Powered Registry
Hoover E, Holliday V, Merullo N, Oberdhan D, Perrone R, Rusconi C, Park M, Phadnis M, Thewarapperuma N, Dahl N. Pain and Health-Related Quality of Life in Autosomal Dominant Polycystic Kidney Disease: Results from a National Patient-Powered Registry. Kidney Medicine 2024, 6: 100813. PMID: 38689835, PMCID: PMC11059322, DOI: 10.1016/j.xkme.2024.100813.Peer-Reviewed Original ResearchHealth-related quality of lifeQuality of lifeHRQoL toolsOutcomes health-related quality of lifeDisease-specific assessment toolsHealth care accessCore outcome domainsDisease-specific patientHealth-related qualityBurden of painCross-sectional assessmentHRQoL modulePositive HRQoLPain interferenceCare accessHealthcare accessPatient experienceConsenting participantsCore questionnaireOutcome domainsImpact ScalePain severityEmotional distressHRQoLPatient reports
2022
Design and Basic Characteristics of a National Patient-Powered Registry in ADPKD
Hoover E, Perrone RD, Rusconi C, Benson B, Dahl NK, Gitomer B, Manelli A, Mrug M, Park M, Seliger SL, Phadnis MA, Thewarapperuma N, Watnick TJ. Design and Basic Characteristics of a National Patient-Powered Registry in ADPKD. Kidney360 2022, 3: 1350-1358. PMID: 36176661, PMCID: PMC9416821, DOI: 10.34067/kid.0002372022.Peer-Reviewed Original ResearchConceptsAutosomal dominant polycystic kidney diseaseKidney diseaseCore questionnaireManagement of ADPKDPatient-reported diagnosisPost-kidney transplantHealth-related qualityPatient-centered outcomesDominant polycystic kidney diseaseQuality of lifePolycystic kidney diseaseHispanics/LatinosCKD stageKidney transplantMedian ageKidney functionNational PatientBurden scoreDisease stageExtrarenal manifestationsPatient enrollmentADPKD patientsCreatinine valuesClinical trialsClinical studies