title: Development of a questionnaire module to supplement the EORTC QLQ-C30 to assess quality of life in patients with hepatocellular carcinoma, the EORTC QLQ-HCC18.
abstract: Measurement of quality of life (QoL) in hepatocellular carcinoma (HCC) requires assessment of factors related to chronic liver disease, as well as issues related to the primary tumour and its treatment. This study describes the development of a questionnaire module in patients from Europe, as well as Taiwan and Hong Kong. The questionnaire was developed according to the European Organisation for Research and Treatment of Cancer (EORTC) QoL Group guidelines. Twenty nine QoL issues were identified from a literature search. Semi-structured interviews with patients (n=32) and health-care professionals (n=10) reduced the issues to 22 items forming a provisional questionnaire. This was tested in 158 patients from three countries. Descriptive statistics and clinical judgement reduced the module to 18 items conceptualised as containing six scales and two single item. This study recommends the EORTC QLQ-HCC18 to accompany the QLQ-C30 to measure QoL in clinical trials in HCC.
authors.affiliation: Department of Social Medicine, Canynge Hall, University of Bristol, Whiteladies Road, Bristol BS8 2PR, UK. j.m.blazeby@bristol.ac.uk
authors.forename: Jane M
authors.initials: JM
authors.lastname: Blazeby
authors.forename: Elspeth
authors.initials: E
authors.lastname: Currie
authors.forename: Benny C Y
authors.initials: BC
authors.lastname: Zee
authors.forename: Wei-Chu
authors.initials: WC
authors.lastname: Chie
authors.forename: Ronnie T
authors.initials: RT
authors.lastname: Poon
authors.forename: O James
authors.initials: OJ
authors.lastname: Garden
mesh_terms: D000328:Adult; D000368:Aged; D006528:Carcinoma, Hepatocellular / Q000523:psychology*; D005260:Female; D006801:Humans; D008113:Liver Neoplasms / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D011795:Surveys and Questionnaires