Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease

Abstract

Background and aims-To develop and assess a disease specific instrument for measuring health related quality of life (HRQL) in patients with chronic liver disease (CLD). Methods-Based on responses from 60 patients with chronic liver disease, from 20 liver experts, and from a Medline search of the literature, items potentially aVecting the HRQL of these patients were identified. A separate sample of 75 patients identified which items they found problematic and rated their importance. Results were explored using factor analysis; domains were chosen and items placed within domains. Redundant questions were eliminated and the final questionnaire was pretested in 10 patients. Using this instrument, HRQL was assessed in a further 133 patients with various types and stages of liver disease. Results-Patients, experts, and the literature search identified 156 items of potential importance. Of these, 35 proved important to over 50% of 75 respondents in the item reduction sample. The factor analysis suggested six domains. After eliminating redundancies, the Chronic Liver Disease Questionnaire (CLDQ) included 29 items in the following domains: fatigue, activity, emotional function, abdominal symptoms, systemic symptoms, and worry. In pretesting, patients found the CLDQ clear and easy to complete in 10 minutes. In another 133 patients, the CLDQ showed a gradient between patients without cirrhosis, Child's A cirrhosis, and those with Child's B or C cirrhosis. CLDQ has evidence for moderate reliability at six months and seems to be responsive. Conclusion-The CLDQ is short, easy to administer, produces both a summary score and domain scores, and correlates with the severity of liver disease. (Gut 1999;45:295-300) Keywords: quality of life; liver disease; liver specific quality of life; well beingThe traditional "biomedical model" of health which is based on the basic sciences (molecular biology, genetics, physiology, biochemistry, etc.) is being integrated with the "social science model" of health, based on a psychosocial and economic foundation. This integrated approach to clinical practice and research in medicine requires not only monitoring the traditional physiological and biochemical outcomes but also health related quality of life (HRQL).

Minimal Hepatic Encephalopathy Impairs Quality of Life

“…40 It is measured by using general health scales like Nottingham Health Profile (NHP), the Sickness Impact Profile (SIP), SF -36 16,[41][42][43] and disease specific scales like Chronic Liver Disease Questionnaire (CLDQ), NIDDK-QA and the Liver Disease Quality of Life Instrument. [44][45][46][47] MHE adversely affects HRQOL as shown by various studies. 11,41,43,[48][49][50] Complex activities which require attention or information processing and psychomotor skills are mainly affected, such as driving a car or planning a trip.…”

Adaptação cultural do Chronic Liver Disease Questionnaire (CLDQ) para população brasileira

“…O escore total é obtido pela soma dos domínios e dividido por 6. Os seis domínios (sintomas abdominais, fadiga, sintomas sistêmicos, atividade, função emocional e preocupação) foram identificados pela análise de principais componentes, com proporção de variação de 0,056 a 0,224 5 .…”

“…A qualidade de vida dos pacientes com doença hepática crônica varia de acordo com as mudanças em seu estado clínico 5 , visto que, com a piora da hepatopatia, muitos pacientes perdem sua autonomia, sentem-se cansados, com desconfortos abdominais, insônia e mudanças de humor.…”

“…Houve, na última década, uma proliferação de instrumentos de mensuração de qualidade de vida 6 , tanto genéricos (uso na população geral, podem comparar doenças crônicas diferentes) quanto específicos (uso em populações caracterizadas por uma determinada doença, identificam as particularidades da situação) 5 .…”

“…• Chronic Liver Disease Questionnaire (CLDQ): único instrumento desenvolvido e validado para todas as etiologias e graus de gravidade da doença hepática 5 .…”