Patient-Reported Outcomes in Glomerular Disease

Abstract

Incorporation of the patient perspective into research and clinical practice will enrich our understanding of the status and management of patients with glomerular disease and may result in therapies that better address patient needs. In recent years, the importance of the patient experience of glomerular disease has become clear, and significant efforts have been undertaken to systematically capture and describe the patient's disease experience. Patient-reported outcome instruments provide a means to assess the patient's experience in a quantitative manner, thus enabling for comparisons within and between patients. Patient-reported outcome assessments are solely on the basis of a patient report about the status of their health without amendment or interpretation by a clinician or others. Patient-reported outcome assessments provide an opportunity to incorporate the patient perspective into clinical care, research, and clinical trials. Our paper provides an overview of terminology and development methods for patient-reported outcomes and reviews (1) currently available patient-reported outcome instruments appropriate for use in glomerular disease, (2) existing patient-reported outcome data in glomerular disease, and (3) opportunities for incorporating patient-reported outcome instruments into clinical care and research.

Keywords: Disease Management; Humans; Patient Outcome Assessment; glomerulonephritis; glomerulopathy; kidney disease; patient-centered outcomes; quality of life.

Figure 1.

A comprehensive view of the health of a patient with glomerular disease may include clinical markers, physician determination of clinical disease severity, patient-reported outcomes, and hard end points. UPC, urine protein-to-creatinine ratio.

Figure 2.

Examples of item response theory item characteristics curves. These three-item information plots provide descriptive information for Likert scale items with five different response options (never, rarely, sometimes, often, always). Higher values for probability (y axis, left) and information (y axis, right), non-overlapping peaks, and a plot that is centered at θ=0 (x axis; θ values should be normally distributed) indicate better item characteristics. The dotted lines indicate overall item information. High and wide is better. Plot (A) provides an example of an excellent item. Plots (B) and (C) provide examples of poor items ([B] = poor discrimination; [C] = poor difficulty).

Figure 3.

The Patient–Reported Outcome Measurement Information System (PROMIS) was developed with item response theory methods. Selection and use of an individual or a subset of items or domains that are specifically relevant to a specified patient population can improve patient–reported outcome measurement precision and reduce question burden for irrelevant domains. (A) Adult domains for ages 18 years old and older. (B) Pediatric domains. Children can complete the PROMIS reliably at age 8 years old and older. Reprinted from the PROMIS Health Organization and the PROMIS Cooperative Group (http://www.nihpromis.org/measures/full_framework.aspx), with permission.