JMIR Publications

ABSTRACT

Background:

Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial healthcare costs. While there is an increasing need to include real patient perspectives in drug development and in the management of CKD, data in this field are scarce.

Objective:

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.

Methods:

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 dataset. Qualitative data were collected prospectively through semi-structured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management.

Results:

The retrospective dataset included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (66%) and most were US residents (87%). Of the 1374 patients who reported comorbidities, the most common were type 2 diabetes (57%), hypertension (48%), hypercholesterolemia (32%), and diabetic neuropathy (27%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (72%) and pain (58%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents, were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating healthcare across providers, and managing clinical care.

Conclusions:

This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.