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. 2020 Jul 29;4(1):64.
doi: 10.1186/s41687-020-00215-8.

Symptoms and impacts in anemia of chronic kidney disease

Susan D Mathias  1 , Steven I Blum  2   3 , Vanja Sikirica  2   4 , Kirsten L Johansen  5 , Hilary H Colwell  1 , Tony Okoro  6
Affiliations

Symptoms and impacts in anemia of chronic kidney disease

Susan D Mathias et al. J Patient Rep Outcomes. .

Abstract

Background: Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients' health-related quality of life.

Methods: We conducted qualitative concept elicitation (CE) and cognitive debriefing (CD) interviews to assess the frequency, duration, and severity of symptoms and impacts associated with anemia of CKD and to facilitate the development of a new patient-reported outcome (PRO) measure. We interviewed 36 patients with CKD and hemoglobin levels ≥8.0 to <12.0 g/dL using a semi-structured interview guide developed specifically for this study until saturation was reached. We used MAXQDA to perform qualitative analysis of interview transcripts to determine the most relevant symptoms and impacts (based on the frequency of concept mentions) experienced by participants.

Results: Most participants had stage 4/5 CKD (81%) and were being treated with an erythropoietin stimulating agent (69%). Spontaneously reported symptoms included feeling tired (79%), shortness of breath (39%), and weak/lacking strength (36%). We developed the Chronic Kidney Disease and Anemia Questionnaire (CKD-AQ), which includes 23 items assessing frequency and severity of the most relevant symptoms and impacts identified by patients with anemia of CKD. The CD interviews confirmed the clarity and relevance of the concepts identified in the CE phase.

Conclusion: The CKD-AQ is a novel PRO measure that captures the frequency and severity of the most relevant symptoms and impacts associated with anemia of CKD. Future studies will evaluate its psychometric properties and its potential utility in anemia management.

Keywords: Anemia; Chronic kidney disease; Cognitive debriefing; Concept elicitation; Patient-reported outcomes; Semi-structured interview.

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Conflict of interest statement

SDM is an employee of, and HHC is a consultant to Health Outcomes Solutions, which received funding from GSK to undertake this study. SIB and VS are former employees of and hold stock in GSK. KLJ has received consulting fees from GSK for Steering Committee participation. TO is an employee of and holds stock in GSK.

Figures

Fig. 1
Fig. 1
PRO Measure Development Process. Overview of the development process for a novel questionnaire to evaluate the symptoms and impacts of anemia of CKD
Fig. 2
Fig. 2
Conceptual Framework
See this image and copyright information in PMC

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