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

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 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. 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 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. Results The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). 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 health care 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.

The Development History and Research Tendency of Medical Informatics: Topic Evolution Analysis

“…In the third stage (2010-2020), medical data analysis remained one of the research hot spots. Derived from topics in stage 2, the purpose of medical informatics research always took user needs into account, including the needs of patients [ 44 ] and doctors [ 45 ]. Meanwhile, studies in this period also paid more attention to applying new emerging technologies in health data analysis, such as deep learning [ 46 ], blockchain [ 47 ], and artificial intelligence [ 48 ].…”

Methods and rationale of the DISCOVER CKD global observational study

“…Qualitative data specific to patients with CKD will be collected by qualitative semistructured interviews in a subset of ∼100 patients. Based on pilot work, it is anticipated that information saturation (where no new information is identified) will be achieved with this number of patients and this will also provide representation across countries [ 34 ]. These interviews will be performed by trained interviewers from a third-party vendor (Health Advances, Newton, MA, USA) with experience in CKD; the format will be either face to face or over the telephone at a time/place convenient to the patient.…”

“…These interviews will be performed by trained interviewers from a third-party vendor (Health Advances, Newton, MA, USA) with experience in CKD; the format will be either face to face or over the telephone at a time/place convenient to the patient. It is anticipated that the duration of the interviews will be 1–2 h. A recent study by James et al [ 34 ] utilizing the PatientsLikeMe online community database was the pilot study for developing the interview transcript used in this study and guided decisions about which symptoms this study should capture.…”

Communicative and Discursive Perspectives on the Medication Experience

“…Many of the things this paper has highlighted are there, reframed or reinvented. Many online genres and types of interaction are quite new, such as social networks [ 205 ] or (accessed date 15 December 2020) [ 8 , 206 ], a website about others with the same medication or condition on which hundreds of thousands of members have shared personal health data and experiences. The age-old tug between listening to authority or to ‘people’ has now been magnified with the social media’s bandwagon effect [ 207 ].…”