[Impact of disease on daily activities, emotions and quality of life of patients with hereditary angioedema]. / Impact de l'angiœdème héréditaire sur les activités de la vie quotidienne, la sphère émotionnelle et la qualité de vie des patients.

INTRODUCTION: Hereditary angioedema (HAE) is characterized by recurrent attacks of swelling of various locations and severity. An impaired quality of life of patients with HAE has been reported by several studies. We aimed at examining the overall impact of the disease in patients followed for type I HAE, particularly its impact on daily life activities, emotions and quality of life. METHODS: A questionnaire was distributed to patients consulting for type I HAE, collecting demographics, disease characteristics, impact on professional life, Hospital Anxiety and Depression score (HAD), SF-36 score and the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR). RESULTS: The 33 patients included reported an average of 5.17 attacks over the last year. Stress was the main trigger A long-term treatment was reported by 58% of patients, 72% received specific treatment in the event of a serious attack. Sick days were reported by 33% of patients during their studies, and by 34% during work. One patient suffered from depressive symptoms and ten from anxious symptoms, according to the HAD score. The areas most impacted on the SF-36 score were general health and vitality. The mean score for MACTAR was low. CONCLUSION: HAE still has a significant impact on the daily and emotional lives of patients, despite the availability of prophylactic and crisis treatments.

Evaluate the subjective experience of the disease and its treatment in the partners of young women with non-metastatic breast cancer.

The impact of the disease experience on the quality of life of the relatives of patients with cancer is now well documented. However, few scales specifically address the partners' subjective quality of life. This study aims to validate a questionnaire assessing the impact of cancer on the quality of life of the partners of young women with breast cancer. Partners (n = 499) of women aged <45 when diagnosed with a non-metastatic breast cancer completed a self-reported questionnaire generated from non-directive interviews led in an initial study. The structure of the scale was examined by exploratory and confirmatory factor analyses. Internal consistency, test-retest reliability and concurrent validity were assessed. The final Partner-YW-BCI contained 36 items and assessed eight dimensions of the subjective experience of partners: (1) feeling of couple cohesion, (2) negative affectivity and apprehension about the future, (3) body image and sexuality, (4) career management, (5) deterioration of the relationships with close relatives, (6) management of child(ren) and of everyday life, (7) financial difficulties, and (8) sharing and support from close relatives. The scale showed adequate psychometric properties, and will help clinicians to identify the problems of partners and to respond to them by an optimal care management.

The subjective experience of young women with non-metastatic breast cancer: the Young Women with Breast Cancer Inventory.

BACKGROUND: The subjective experience of young women with breast cancer has some particular features linked to the impact of the disease and its treatment on their age-related issues (e.g. desire for a child, couple relationship, career management). Despite these specific concerns, no questionnaire currently targets the young breast cancer patient's quality of life, subjective experience or common problems when facing cancer. This study presents the psychometric validation of an inventory that aimed to measure the impact of breast cancer on the quality of life of young women (<45 years of age) with non-metastatic disease. METHODS: 546 women aged <45 years when diagnosed with a non-metastatic breast cancer were recruited in 27 French cancer research and treatment centers. They answered a self-reported questionnaire created from verbatim collected by non-directive interviews carried out with 69 patients in a first qualitative study. Exploratory and confirmatory analyses were conducted in order to obtain the final structure of the scale. Internal consistency, test-retest reliability and concurrent validity with quality of life questionnaires currently used (QLQ-C30 and the QLQ-BR23 module) were then assessed. RESULTS: The YW-BCI36 contains 36 items and highlights 8 factors: 1) feeling of couple cohesion, 2) negative affectivity and apprehension about the future, 3) management of child(ren) and of everyday life, 4) sharing with close relatives, 5) body image and sexuality, 6) financial difficulties, 7) deterioration of relationships with close relatives, and 8) career management. Psychometric analyses indicated good internal consistency (Cronbach's alpha values ranging from 0.76 to 0.91) and temporal reliability (Bravais-Pearson correlations ranging from 0.66 to 0.85). As expected, there were quite strong correlations between the YW-BCI36 and the QLQ-C30 and QLQ-BR23 scores (r ranging from 0.20 to -0.66), indicating adequate concurrent validity. CONCLUSIONS: The YW-BCI36 was confirmed as a valid scale for evaluating the subjective experience of breast cancer in young women. This instrument could help to identify the problems of these women more precisely, in order to respond to them better by an optimal care management. This scale may improve the medical, psychological and social care of breast cancer patients.

Cancer risk comparative perception and overscreening behaviours of non-carriers from BRCA1/2 families.

Cancer-free women who are from families with an inherited form of breast and/or ovarian cancer (BRCA1/2) are referred to as 'unaffected non-carriers' when the results of genetic testing for the inherited gene are negative. Recent studies have identified overscreening behaviours (undergoing more screening tests for cancer than are medically warranted) among these women, even though they do not require specific cancer monitoring. Overscreening behaviours deserve particular attention due to their potential psychological drivers and implications. The principal objective of this study was to examine the factors, including state anxiety, feelings of self-vulnerability, and the comparative perception of cancer risk that might explain these overscreening behaviours. Unaffected non-carriers women (n = 77) were asked about these different variables. Overscreening was associated with and determined by feelings of self-vulnerability and the comparative perception of cancer risk, but was not associated with anxiety. An increase in feelings of self-vulnerability or elevated comparative pessimism (CP) was related to the participants' decision to be frequently screened. Patients' perceptions of the risk should be considered in measures or information aimed at preventing inappropriate overscreening behaviours.

Are grafts of parts of human embryos resulting from requested legal abortions on to nude mice licit?

'Nude' mice are mammals which are congenitally incapable (for well-known biological reasons) of rejecting grafts of any tissue from any other species. It is thus possible to transplant human tissues into these animals and to study their survival or growth over long periods (one year or more). For obvious ethical reasons, the study of the development of tissues and organs of human embryos cannot be carried out directly on women during pregnancy. All experimental embryology studies are therefore carried out on other mammals. Requested legal abortions provide tissues and organs from human embryos of four to ten weeks on a daily basis. Can the grafting of parts of human embryos on to 'nude' mice be envisaged for scientific, diagnostic or therapeutic purposes? Can these transplants be left to develop and to be modified experimentally? What regulations need to be established in this new scientific domain? These questions and some initial outlines of answers are presented in this article.