title: Cross-cultural development of a quality-of-life measure for patients with melanoma: phase 3 testing of an EORTC Melanoma Module.
abstract: Melanoma is an increasingly common skin cancer worldwide. Recent treatment advances have provided patients and healthcare professionals (HCPs) with choices where quality of life (QoL) and toxicity are important considerations. A melanoma-specific QoL questionnaire is being developed in a cross-cultural setting using a four phase process developed by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group. In phase 1, a literature search identified a list of pertinent QoL issues; this was shown to HCPs and patients in eight countries and rated for importance and relevance. Questions were constructed for the highest-rated issues (phase 2) and piloted in another patient sample (phase 3). Using EORTC Quality of Life Group criteria and sequential use of factor and Rasch analysis, scales were hypothesized for field testing (phase 4). Seven QoL domains (disease symptoms, treatment issues, financial issues, access/quality of information, satisfaction with care, psychosocial issues and support), comprising 73 QoL issues, were rated by 46 HCPs and 78 patients. Fifty-six issues were rephrased as questions and piloted with 132 patients. A 38-item questionnaire (QLQ-MEL38) is available for field testing in conjunction with the EORTC QLQ-C30. This study has shown that melanoma patients have important QoL issues that have been incorporated into a new cross-culturally validated instrument. Future testing of this EORTC module is planned and will be an important step forward in providing reliable QoL data to aid future decision-making in the management and clinical trials of this complex group of patients.
authors.affiliation: aPatricia Ritchie Centre for Cancer Care and Research, The Mater Hospital bThe University of Sydney cThe Psycho-Oncology Co-operative Research Group (PoCoG), University of Sydney dMelanoma Institute Australia eOsman Consulting Pty Ltd fSchool of Psychiatry, University of New South Wales, Sydney, New South Wales gPrincess Alexandra Hospital, Brisbane, Queensland, Australia hMount Vernon Cancer Centre, Northwood iNorfolk and Norwich University Hospital NHS Trust, Norwich, UK jDepartment of Oncology, Karolinska University Hospital kDepartment of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden lQuality of Life Department, EORTC Headquarters, Brussels, Belgium mMelanoma and Sarcoma Unit, Veneto Institute of Oncology (IOV-IRCCS), Padova, Italy nFaculty of Medicine, University of Belgrade oUniversity Medical Center, Bezanijska Kosa, Belgrade, Serbia pEindhoven Cancer Registry, Comprehensive Cancer Centre, Eindhoven qCentre of Research on Psychology in Somatic Diseases (CoRPS), Tilburg University, Tilburg, The Netherlands.
authors.forename: Julie B
authors.initials: JB
authors.lastname: Winstanley
authors.forename: Teresa E
authors.initials: TE
authors.lastname: Young
authors.forename: Frances M
authors.initials: FM
authors.lastname: Boyle
authors.forename: Mia
authors.initials: M
authors.lastname: Bergenmar
authors.forename: Andrew
authors.initials: A
authors.lastname: Bottomley
authors.forename: Bryan
authors.initials: B
authors.lastname: Burmeister
authors.forename: Luca G
authors.initials: LG
authors.lastname: Campana
authors.forename: Jennifer J
authors.initials: JJ
authors.lastname: Garioch
authors.forename: Madeleine
authors.initials: M
authors.lastname: King
authors.forename: Dejan V
authors.initials: DV
authors.lastname: Nikolic
authors.forename: Lonneke V
authors.initials: LV
authors.lastname: van de Poll-Franse
authors.forename: Robyn
authors.initials: R
authors.lastname: Saw
authors.forename: John F
authors.initials: JF
authors.lastname: Thompson
authors.forename: Edward G
authors.initials: EG
authors.lastname: White
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003431:Cross-Cultural Comparison; D005060:Europe; D005260:Female; D006801:Humans; D008297:Male; D008545:Melanoma / Q000523:psychology / Q000628:therapy*; D008875:Middle Aged; D009362:Neoplasm Metastasis; D011594:Psychometrics; D011788:Quality of Life; D012878:Skin Neoplasms / Q000523:psychology / Q000628:therapy*; D012955:Societies, Medical; D011795:Surveys and Questionnaires