COSMIN database

Measurement properties of patient-reported outcome measures (PROMs) used in adult patients with chronic kidney disease: A systematic review

Aiyegbusi, O. L., Kyte, D., Cockwell, P., Marshall, T., Gheorghe, A., Keeley, T., Slade, A., and Calvert, M.
BACKGROUND: Patient-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.

METHODS: Four 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.

RESULTS: The 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.

CONCLUSIONS: We 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.
PLoS One
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Adults (18-65)
Diseases of and symptoms related to the genitourinary system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
CDQOL - Chinese Dialysis Quality of Life Scale
CHEQ - CHOICE Health Experience Questionnaire
CKD-SBI - CKD-Symptom Burden Index
DSI - Dialysis Symptom Index
EQ-5D - EuroQoL-5 Dimensions   
ESRD-SCL (-TM) - End-Stage Renal Disease Symptom Checklist (-Transplantation Module)
GIQLI - Gastrointestinal Quality of Life Index
GSRS - Gastrointestinal Symptom Rating Scale
KDQ - Kidney Disease Questionnaire
KDQOL-36 - Kidney Disease Quality of Life-36 Questionnaire
KDQOL - Kidney Disease Quality of Life
KDQOL (modified) - modified Kidney Disease Quality of Life
KDQOL-SF - Kidney Disease Quality of Life-short form
KTQ - Kidney Transplant Questionnaire
M-ESAS - Modified Edmonton Symptom Assessment System
MTSOSD - Modified Transplant Symptom Occurrence and Symptom Distress Scale
NHP - Nottingham Health Profile   
QLI 3.0 - Quality of Life Index 3.0
RTQ - ReTransQoL version 1 and version 2
SF-12 - 12-item Short Form Health Survey [alias: RAND-12]
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
TTO - Modified Time Trade-Off
WHOQOL-BREF (Dialysis)