Development of the Melanoma Concerns Questionnaire (MCQ‐28); refinement of the EORTC QLQ‐MEL38 module

Abstract

Objective: Few patient-reported outcome measures (PROMs) have been developed that adequately measure the patient-experience following diagnosis and treatment of melanoma. Building on previous research, which developed the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Module (QLQ-MEL38), the aim of this study was to further test the hypothesised domain structure and psychometric properties of the phase 3 module, in a new larger sample of melanoma patients. Methods: Melanoma patients (n = 270) were recruited from four countries (Australia, England, Serbia, and Spain). Patients completed the EORTC core questionnaire (QLQ-C30), the QLQ-MEL38, and a sociodemographic survey. Using this new larger dataset, comparisons were made with the hypothesised domain structure of the EORTC phase 3 module using principal component analysis. Items which formed subscales in a revised domain structure were then tested for goodness of fit (GoF) to the Rasch model. Results:The original hypothesised and final domain structures were similar but not identical. Twenty-four items (83%) loaded onto the same distinct subscales previously generated by phase 3, and item-by-item comparison of the two pattern matrices indicated an extremely close match. Ten items were removed from the QLQ-MEL38 phase 3 module, and rescoring of some items was required. Four subscales, together with five individual items, comprised the final instrument. Conclusion:The newly developed measure (named the Melanoma Concerns Questionnaire; MCQ-28) was found to tap into several important psychosocial domains of concern to melanoma patients, particularly those being managed in "usual" clinic settings. KEYWORDScancer, melanoma, psychometrics, quality of life, reproducibility of results, surveys and questionnaires

What matters most to people with metastatic uveal melanoma? A qualitative study to inform future measurement of health-related quality of life

“…and 'How important is it for you to see the same members of your healthcare team at each clinic visit?' [42].…”

“…Single items related to clinical trials were also relevant, although some refinement may be necessary, for instance, rewording ‘Is making multiple visits for tests difficult for you?’ to ‘Is making multiple visits for treatment difficult for you?’. It is also worth noting that the shorter version of the QLQ-MEL38 – the Melanoma Concerns Questionnaire (MCQ-28) – excludes items relevant to patients with mUM, including ‘Have you felt able to plan for the future?’ and ‘How important is it for you to see the same members of your healthcare team at each clinic visit?’ [42].…”

Assessment of the perceived burden associated with Malignant Melanoma with Pictorial Representation of Illness and Self Measure (PRISM) and Melanoma Concerns Questionnaire (MCQ-28)

“…PRISM was administered to all participants, while MCQ-28 [ 9 ], which was developed at the University of Sydney and translated into Italian for this study, was kindly provided by the authors in January 2021. For this reason, MCQ-28 was administered to the patients included from that time and not to those included in the previous weeks after the study began.…”

“…Anxiety about an increased risk of MM development among relatives can further affect their health-related quality of life. Therefore, for such patients, MM can be considered a chronic, hugely distressing disease [ 9 ].…”

“…The more a tool is able to identify the specific, critical issues of a certain disease, the more it fulfills its function of duly measuring the disease-related burden and suffering. A few questionnaires have been specifically designed for use with MM patients, namely the Malignant Melanoma Module [ 13 ], the FACT-Melanoma (FACT-M) [ 14 ], the EORTC Melanoma Module (QLQ-MEL38) [ 15 ] and its revised version, the Melanoma Concerns Questionnaire (MCQ-28) [ 9 ]. The questionnaires developed by the EORTC appear particularly suitable for the assessment and quantification of MM-related issues, which are grouped by domains [ 9 , 15 , 16 ].…”