Abstract

BackgroundPatient-reported outcome measures (PROMs) can provide valuable information which may assist with the care of patients with chronic kidney disease (CKD). However, given the large number of measures available, it is unclear which PROMs are suitable for use in research or clinical practice. To address this we comprehensively evaluated studies that assessed the measurement properties of PROMs in adults with CKD.MethodsFour databases were searched; reference list and citation searching of included studies was also conducted. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist was used to appraise the methodological quality of the included studies and to inform a best evidence synthesis for each PROM.ResultsThe search strategy retrieved 3,702 titles/abstracts. After 288 duplicates were removed, 3,414 abstracts were screened and 71 full-text articles were retrieved for further review. Of these, 24 full-text articles were excluded as they did not meet the eligibility criteria. Following reference list and citation searching, 19 articles were retrieved bringing the total number of papers included in the final analysis to 66. There was strong evidence supporting internal consistency and moderate evidence supporting construct validity for the Kidney Disease Quality of Life-36 (KDQOL-36) in pre-dialysis patients. In the dialysis population, the KDQOL-Short Form (KDQOL-SF) had strong evidence for internal consistency and structural validity and moderate evidence for test-retest reliability and construct validity while the KDQOL-36 had moderate evidence of internal consistency, test-retest reliability and construct validity. The End Stage Renal Disease-Symptom Checklist Transplantation Module (ESRD-SCLTM) demonstrated strong evidence for internal consistency and moderate evidence for test-retest reliability, structural and construct validity in renal transplant recipients.ConclusionsWe suggest considering the KDQOL-36 for use in pre-dialysis patients; the KDQOL-SF or KDQOL-36 for dialysis patients and the ESRD-SCLTM for use in transplant recipients. However, further research is required to evaluate the measurement error, structural validity, responsiveness and patient acceptability of PROMs used in CKD.

Highlights

  • Chronic kidney disease (CKD) is a global health issue [1]

  • We suggest considering the KDQOL-36 for use in pre-dialysis patients; the KDQOL-SF or KDQOL-36 for dialysis patients and the end stage renal disease (ESRD)-SCLTM for use in transplant recipients

  • Further research is required to evaluate the measurement error, structural validity, responsiveness and patient acceptability of Patient-reported outcome measures (PROMs) used in chronic kidney disease (CKD)

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Summary

Introduction

Chronic kidney disease (CKD) is a global health issue [1]. It affects up to 16% of the adult population in the developed world and is associated with increased morbidity and mortality that is directly related to severity [2, 3]. Patients with more advanced CKD often report multiple ‘clusters’ of symptoms including drowsiness, pain, pruritus and dry skin [9]. This overall symptom burden may have a negative impact on the perceived health-related quality of life (HRQOL) of patients with end-stage renal disease [10, 11]. Given the large number of measures available, it is unclear which PROMs are suitable for use in research or clinical practice.

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