Background :
The quality of life of couples which one of the members is affected by a cancerous pathology at a relatively young age is important to evaluate in global care. No questionnaire specifically addresses some thematic proper to young women (ex education, desire for a child(s), couple relationship), problems which are yet important for young women suffering from breast cancer. Besides, no questionnaire evaluates the partner's quality of life in this particular context, even if he is frequently the first source of support for the woman (Vanlemmens et al., 2012).
Objectives :
The main objective was to create a particular and specific tool for measuring the impact of breast cancer on the quality of life of young women (< 45 years of age) with non-metastatic disease and the quality of life of their partners. This work presents the psychometric validation of two questionnaires for patient and partner consisted of items comparable to the semantic level.
Methods:
We followed the different steps to construct a quality of life tool. After preliminary non-directive interviews and identification of relevant items, we administered the questionnaires on a wide sample of 546 young breast cancer patients and 497 partners. Psychometric testing assessed the hypothesized scale structure based on an examination of item-scale correlation, scale reliability by testing for internal consistency using Cronbach's alpha coefficient, construct validity with inter-scale correlations.
Results :
Items analyses indicate a good internal consistency of both questionnaires (superior to .75). This questionnaire includes 37 items. The factorial structure highlights 8 factors : 1) management of children and of everyday life, 2) negative affectivity and apprehension about future, 3) feeling of couple cohesion, 4) financial difficulties, 5) body image and sexual life, 6) deterioration with close relations, 7) sharing and support of close relations, and 8) management of the professional life..This structure explains respectively 56% for the patients and 58% for the partners of the total variance. As expected, convergent validity showed strong correlations with Kalicou scales and quality of life measures (QLQC-30 and QLQBR-23).
Conclusions:
Overall psychometric results for the 2 Kalicou questionnaires confirmed them as valid questionnaires for breast cancer patients and partners. This study will allow the clinicians to have a measurement tool for subjective real-life experience of young breast cancer women and their partner. These questionnaires will also allow comparisons according to the stage and study the interactions of couple. This tool should help to identify modifications of the subjective quality of life. The objective is to improve the medical, psychological and social care for patients and their partner, with a systemic, dynamic approach.
Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P3-09-07.
Ethics review committees have become a common institution in English-speaking research communities, and are now increasingly being adopted in a variety of research environments. In light of existing debates on the aptness of ethics review boards for assessing research work in the social sciences, this article investigates the ways in which researchers navigate issues of research ethics in the absence of a formal review procedure or of an ethics review board. Through the analysis of qualitative and quantitative data, the article questions the overall utility of ethics review boards. Highlighting the importance of space for sharing, the authors argue for the development of a new type of structure that takes into account researchers' 'ethos of responsibility' as an adequate ethical compass for research in the social sciences.
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