COSMIN database

Assessing quality of life in primary biliary cirrhosis

Rannard, A., Buck, D., Jones, D. E., James, O. F., and Jacoby, A.
BACKGROUND AND AIMS: Assessment of health-related quality of life (HRQOL) is not routinely reported in the literature on chronic liver disease (CLD). Few studies have examined quality of life (QOL) in patients with primary biliary cirrhosis (PBC) despite its significant functional impact. One of the reasons for the lack of HRQOL measurement in patients with PBC may be the absence of a well-recognized and widely used measure that clinicians can use in ordinary clinical practice. The aim of this study is to evaluate HRQOL measures used in patients with PBC and examine the suitability of the measures for these patients.

METHODS: A literature search identified reports that focused on any aspect of QOL in patients with PBC. Key texts were identified containing generic, domain-specific, and condition-specific measures. The identified measures were systematically evaluated for appropriateness, acceptability, reliability, validity, precision, and responsiveness.

RESULTS: Twenty measures were identified from 9 key texts. Six of the measures were previously validated generic measures; 10 were domain-specific measures previously used to measure fatigue, depression, and psychological distress in general and psychiatric populations; and 4 measures had been developed in patients with CLD. Reporting of reliability and validity generally was consistent for all measures used. However, reporting of the remaining criteria was variable, particularly in relation to responsiveness over time and acceptability of the measures to patients with PBC.

CONCLUSIONS: A clearer and more rigorous approach is needed in reporting the properties of HRQOL measures used in patients with PBC to help clinicians decide which measures are most suitable for these patients.
Clin Gastroenterol Hepatol
1542-3565 (Print)
Publication year:
General health perceptions / HRQoL:
Health-related quality of life
Adults (18-65)
Seniors (65+)
Diseases of and symptoms related to the digestive system
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
7 - Observations
BDI - Beck Depression Inventory (versions: mBDI)   
CES-D - Centre for Epidemiologic Studies-Depression Scale (versions: CES-D-R; CES-D-8; CES-D-10; CES-D-11; CES-D-15; CES-D-20; CES-D-Children; CES-D-SF; CES-D m)   
CLDQ - Chronic Liver Disease Questionnaire
COOP/WONCA charts - COOP/WONCA Functional Healh assessment charts   
EQ-5D - EuroQoL-5 Dimensions   
FAI / FSI - Fatigue Assessment Instrument (FAI) = Fatigue Severity Inventory (FSI)
FIS / FFSS - Fatigue Impact Scale (FIS) or Fisk Fatigue Severity Score (FFSS)
FMMS - Folstein Mini Mental State
HAM-D - Hamilton Rating Scale for Depression [alias: HAMD; HDRS; HRSD]   
HOPES - Human Immunodeficiency Virus Overview of Problems Evaluation System
IWB - Index of Well-Being
KPS - Karnofsky Performance Scale (of: Status)
LDQOL - Liver Disease Quality of Life questionnaire
LDSI - Liver Disease Severity Index
MFI - Multidimensional Fatigue Inventory (versions: MFI-20)   
NIDDK-QOL - National Institute of Diabetes and Digestive and Kidney Diseases-Quality of Life
PSQI - Pittsburgh Sleep Quality Index
SCL-90 - Symptom Checklist-90
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP)