COSMIN database

Formal literature review of quality-of-life instruments used in end-stage renal disease

Cagney, K. A., Wu, A. W., Fink, N. E., Jenckes, M. W., Meyer, K. B., Bass, E. B., and Powe, N. R.
Although quality-of-life assessment is an important complement to conventional clinical evaluation, there are limited opportunities for researchers in end-stage renal disease (ESRD) to examine evidence for a range of quality-of-life measures. To better understand how quality of life has been conceptualized, measured, and evaluated for ESRD, we conducted a structured literature review. Eligible articles were identified from a MEDLINE search, expert input, and review of references from eligible articles. A standardized instrument was created for article review and included type of measure, instrument development process, study sample characteristics, quality-of-life domains, and reliability and validity testing. From 436 citations, 78 articles were eligible for final review, and of those, 47 articles contained evidence of reliability or validity testing. Within this set, there were 113 uses of 53 different instruments: 82% were generic and 18% were disease specific. Only 32% defined quality of life. The most frequently assessed domains were depression (41%), social functioning (32%), positive affect (30%), and role functioning (27%). Testing was completed for test-retest reliability (20%), interrater reliability (13%), internal consistency (22%), content validity (24%), construct validity (41%), criterion validity (55%), and responsiveness (59%), Few articles measuring quality of life in ESRD defined quality-of-life domains or adequately described instrument development and testing. Generic measures, such as the Sickness Impact Profile, and disease-specific measures, such as the Kidney Disease Questionnaire, had been tested more thoroughly than others. Standardized reporting and more rigorous testing could help researchers make informed choices about instruments that would best serve their own and their patients' needs. (C) 2000 by the National Kidney Foundation, Inc.
DOI 10.1053/ajkd.2000.8982
<Go to ISI>://WOS:000089227100013
American Journal of Kidney Diseases
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Functional status:
Cognitive/mental functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Self-rated health
Overall quality of life:
Overall quality of life
Adults (18-65)
Seniors (65+)
Diseases of and symptoms related to the genitourinary system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
Affect Scale
Atkinson Life Happiness Rating
BDI - Beck Depression Inventory   
Bradburn's Affect Balance Scale
Campbellā€™s Indices of General Affect, Well-Being, and Life Satisfaction;
CDI - Cognitive Depression Index
CES-D - Centre for Epidemiologic Studies-Depression Scale   
DRQS - Dialysis Relationship Quality Scale
ESRD-SI - End-stage Renal Disease Severity Index
GHQ - General Health Questionnaire
GTXS - General Treatment Stresses Scale
Health Measurement Questionnaire
Health Satisfaction Index
HQL - Hemodialysis Quality of Life
IEQ - Illness Effects Questionnaire
IIRS - Illness Intrusion Rating Scale
Illness-Coping Behavior Measure
Index of ADL
Index of General Well-being
KDQ - Kidney Disease Questionnaire
KDQOL - Kidney Disease Quality of Life
Life-Event Inventory
Life Satisfaction
LSQ - Life Situation Questionnaire
MHI (Q) - McMaster Health Index (Questionnaire)
MHLC - Multidimensional Health Locus of Control Scale   
MSSS - Modality Specific Stresses Scale
NHP - Nottingham Health Profile   
PaQoL - Patient-assessed Quality of Life Questionnaire
POMS - Profile of Mood States
PRAS - Patient Rated Anxiety Scale
QL 100 mm VAS - Quality of Life 100 mm Visual Analogue Scale
Rosenberg Happiness Scale
RSES - Rosenberg Self-Esteem Scale
SASS - Self-anchoring Striving Scale
SES - Simmons Self-Esteem scale
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SIP - Sickness Impact Profile   
SLAI - Social/Leisure Activities Index
Sleep Complaints Questionnaire
Social Well-being Summary Score
Spitzer Quality of Life Index
STAI - State-Trait Anxiety Inventory
Summary Physical Well-being Score
SWLS - Satisfaction With Life Scale
Symptom Scale
Symptoms Checklist
Symptoms (Kuper-Detre System 2)
Therapy Satisfaction Summary Score
TTO - Time Trade-Off
Work Status Instrument