Quality of Life Study (MEL-QOL)

Title of study: Improving Quality of Life measurement for melanoma patients and their families: Validity and reliability study of QOL instruments in an Australian sample

Acronym: MEL QOL study

Lead Investigator: Dr Julie Winstanley, Head, Research and Statistics Group, MIA


Principle and Associate Investigators:

Professor Madeleine King, Cancer Australia Chair in Cancer Quality of Life; Director, Quality of Life Office, PoCoG, the University of Sydney

Professor John Thompson, Director, Melanoma Institute Australia and Professor of Surgery (Melanoma and Surgical Oncology), the University of Sydney

Dr Grahame Simpson, Rehabilitation Studies Unit, the University of Sydney, and the Brain Injury Rehabilitation Unit, Liverpool Health Service

Professor Rick Kefford, Director, Westmead Institute Cancer Research and Director of Clinical Research and Medical Oncology, Melanoma Institute Australia


International Collaborators:

Dr Anna Costantini, Sant‘ Andrea Hospital Sapienza , Psycho-Oncology Unit, the University of Rome, Italy

Dr Anne Brecht Francken, Isala Klinieken Zwolle, Department of Surgery, The Netherlands

Dr Pippa G Corrie, Addenbrooke’s Hospital, Cambridge, England

Dr Jerry Marsden, Skin Oncology Service, University of Birmingham, England

Dr Luca G Campana, Melanoma and Sarcoma Unit, University of Padova, Italy

Dr Lonneke V. van de Poll-Franse, Tilburg University, AE Eindhoven, The Netherlands


Background:

The most commonly used cancer QOL scales have received little critical attention in terms of their performance within melanoma populations and there is a paucity of data on the QOL of melanoma patients in Australia and worldwide. Only two clinically validated QOL questionnaires designed for use with melanoma patients were identified in a literature search; the FACT-M (Cormier, 2008) and a study specific MM module developed in Sweden (Sigurdardottir, 1993). The study so far also reveals that additional melanoma specific questionnaires are required to adequately measure the full range of QOL issues in this population, across a range of stages of disease. Extensive literature has documented both heightened rates of distress for cancer patients & their families throughout the course of cancer diagnosis and treatment. The QOL trajectory differs along the course of treatment and there is insufficient information available clarifying the different factors which influence both patient and relatives reported QOL


Aim of the study:

The conduct of the study will result in the development of a melanoma-specific QOL questionnaire which would assist in the early detection of psychological stress in patients and their families, a prospect that may add value to the prognosis of patients and resourcing families to ease their psychological burden


Current status of study:

Early qualitative research work (via focus groups/one to one interviews) will be carried out during the latter part of 2009 to identify pertinent melanoma QOL issues. These data will be content analysed and new questionnaire items generated for piloting on a larger group of patients and family members during the first part of 2010. The psychometric properties of the new questionnaire will then be analysed in terms of validity and reliability.


Time scale: Study will be completed by August 2010

Funding: University of Sydney Cancer Research fund (competitive grant) with additional funding from the Australian and New Zealand Melanoma Trials Group

Publications/Presentations: The study has been presented at the 7th World Congress on Melanoma (May 2009) and expressions of interest from additional international collaborators are being sought

Contact address: Dr Julie Winstanley, Melanoma Institute Australia, University of Sydney, Level 2, 1a Eden St, North Sydney, NSW 2060, Australia.

Phone: +61 2 9911 7271

E-mail: JLIB_HTML_CLOAKING