Gynaecological cancer has been shown to affect women's sexual functioning, yet evidence suggests that healthcare professionals rarely discuss sexual issues with women diagnosed with a gynaecological cancer. Few studies have investigated why there is a lack of communication between healthcare professionals and women about sexual issues. Our study investigated the attitudes and behaviours of the 27 doctors and 16 nurses treating women with ovarian cancer in our centre towards the discussion of sexual issues, and also investigated women's experiences of such communication. Our findings showed that although most healthcare professionals thought that the majority of women with ovarian cancer would experience a sexual problem, only a quarter of doctors and a fifth of nurses actually discussed sexual issues with the women. Reasons for not discussing sexual issues included 'it is not my responsibility', 'embarrassment', 'lack of knowledge and experience' and 'lack of resources to provide support if needed'. While some of these reasons were also viewed as barriers by the women, the results demonstrate that there is a need from the women's perspective to improve communication about sexual issues, although the most appropriate approach to this remains to be investigated.
Summary.A multiple myeloma-specific quality-of-life questionnaire module has been designed in collaboration with the EORTC Quality-of-Life Study Group to be used in clinical trials with the EORTC QLQ-C30, a general cancer questionnaire. Strict methodology was employed to ensure thorough and appropriate development of the module. An extensive literature review was performed to identify healthrelated quality-of-life issues relevant to patients with multiple myeloma. Semi-structured interviews were then carried out in several European countries with health-care providers experienced in the treatment of patients with multiple myeloma, and with a group of patients with multiple myeloma, to identify the issues which were most important to patients. A questionnaire was devised from the list of issues, using a 1-week time-frame and response categories consistent with the EORTC QLQ-C30. The provisional questionnaire and the EORTC QLQ-C30 were administered to patients with multiple myeloma in each participating country with further semi-structured interviews to refine the content and design of the questionnaire. A review of the results obtained in each stage of development resulted in a 24-item myeloma-specific module, the EORTC QLQ-MY24, which assesses disease-specific symptoms and their impact on everyday life, treatment side-effects, social support, and future perspective. The module is currently undergoing further international field-testing to assess its psychometric properties.Keywords: multiple myeloma, quality of life, questionnaire, EORTC, cross-cultural.The key clinical outcomes of cancer treatment, important for both patients and health-care professionals, are survival and health-related quality of life (HRQoL). It is of paramount importance to choose appropriate and well-developed tools to assess the aspects of HRQoL most likely to be affected by both the disease and the treatment. The development of HRQoL measures is based on principles of test construction and evaluation. A common test construction strategy is to generate a large pool of issues from which to derive the most appropriate and sensitive set. The selection of items is based on patients' opinions as well as on health-professionals' views. The aim of this thorough approach is to ensure that the content and breadth of coverage of the questionnaire under development is appropriate for the population under study, that it asks relevant questions and does not miss out important issues. This task can be achieved only by careful initial construction of the questionnaire, and omissions at this stage cannot be compensated for by statistical analysis at
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