Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study

Journal of Medical Internet Research
Glen JamesCathy Emmas

Abstract

Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients' experiences with CKD and its management. The retrospective data set included 1848 eligible patients with CKD, and median age was 56 ...Continue Reading

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Citations

Mar 7, 2021·Pharmacy : Journal of Pharmacy, Education and Practice·Lewis H Glinert
Jul 13, 2021·Clinical Kidney Journal·Roberto Pecoits-FilhoDavid C Wheeler
Aug 4, 2021·Deutsche medizinische Wochenschrift·Peter Steffen, Frieder Keller

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Clinical Trials Mentioned

NCT04034992

Software Mentioned

PLM
ATLAS
DISCOVER
ti
PatientsLikeMe

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