Five-Year Symptom Trajectories in Nondialysis-Dependent CKD Patients

Abstract

Background and objectivesLate stages of CKD are characterized by significant symptom burden. This study aimed to identify subgroups within the 5-year trajectories of symptom evolution in patients with CKD and to describe associated patient characteristics and outcomes.Design, setting, participants, & measurementsAmong 2787 participants (66% men) with eGFR <60 ml/min per 1.73 m2enrolled in the CKD–Renal Epidemiology and Information Network (CKD-REIN) cohort study from July 2013 to May 2016, we assessed symptoms annually using the Kidney Disease Quality of Life-36 (KDQOL-36) questionnaire until December 2020. A total of 9121 measures were reported over follow-up; all participants had symptoms scored for at least one time point. We used a joint latent class-mixed model to distinguish profiles of symptom trajectories.ResultsPatient mean age (±SD) at baseline was 67±13 years, and mean eGFR was 33±13 ml/min per 1.73 m2. The prevalence of each symptom ranged from 24% (chest pain) to 83% (fatigue), and 98% of participants reported at least one symptom. After a median (interquartile range) follow-up of 5.3 (3.4–6.0) years, 690 participants initiated KRT, and 490 died before KRT. We identified two profiles of symptom trajectories: a “worse symptom score and worsening trajectory” in 31% of participants, characterized by a low initial symptom score that worsened more than ten points over time, and a “better symptom score and stable trajectory” in 69% of participants, characterized by a high initial score that remained stable. Participants in the worse symptom score and worsening trajectory group had more risk factors for CKD progression at baseline, worse quality of life, and a higher risk of KRT and death before KRT than other participants.ConclusionsThis study highlights a significant worsening of symptoms in about one third of the participants, whereas the majority reported low symptom severity throughout the study.

Symptom Trajectories in the Electronic Health Record during the Transition to Maintenance Dialysis

“…Traditionally, the detection of kidney disease-related symptoms have used standardized questionnaires, such as the dialysis symptom index 2 or the kidney disease quality of life instruments, 15 administered to participants in trials or longitudinal cohorts. [4][5][6][7][8][9][10] These questionnaires are the gold standard for symptom ascertainment, but their use in routine clinical practice is impractical. We found that our results were generally consistent with findings of studies using standardized instruments, although symptoms seem to be under-recorded relative to dedicated patient surveys.…”

“…[1][2][3] Fatigue, pain, nausea and vomiting, alterations in cognition, and others are highly prevalent. [4][5][6][7][8][9][10] Recent studies have examined symptom burden and trajectories in advanced CKD [5][6][7]9,10 and changes in symptoms during the transition from advanced CKD to dialysis. 4 However, the potential implications of detecting symptoms recorded in the electronic health record (EHR) using natural language processing (NLP), an artificial intelligence-based approach designed to detect difficult-to-quantify textual elements recorded by care clinicians, have not been well studied in patients with advanced kidney disease.…”

“…1–3 Fatigue, pain, nausea and vomiting, alterations in cognition, and others are highly prevalent. 4–10 Recent studies have examined symptom burden and trajectories in advanced CKD 5–7,9,10 and changes in symptoms during the transition from advanced CKD to dialysis. 4…”

Can We Turn the Symptom Curve?

“…The descriptive symptoms data for this group of patients with advanced CKD are also informative, with most patients reporting fatigue (83%) and relatively few noting chest pain (24%). The distribution of symptom frequency over the study was relatively stable, with muscle pain, fatigue, itchy and dry skin, and poor appetite demonstrating a higher severity across the 5 years of the study (see Supplemental Figure 2 in [3]). These observations may provide potential therapeutic targets to change the trajectory for patients with advanced CKD.…”

“…In this issue of CJASN , Faye et al applied a novel strategy to identify subgroups of symptom trajectories among patients with CKD in stages 3–5 within the French CKD–Renal Epidemiology and Information Network (CKD-REIN) cohort (3). The investigators followed 2787 patients to assess symptom burden related to CKD over a period of 5 years.…”