Predictors of health-related quality of life in a large cohort of adult patients living with sickle cell disease in France: the DREPAtient study.

Background: Sickle cell disease (SCD) is an inherited autosomal recessive disorder exhibiting a range of symptoms and acute and/or chronic complications that affect the quality of life. This study aimed to assess health-related quality of life (HRQoL) and to identify the associated factors in adult patients with SCD in France. Methods: DREPAtient is a cross-sectional, multicenter study conducted from June 2020 to April 2021 in France and in certain French overseas territories where SCD is highly prevalent. Sociodemographic and clinical data were collected online. HRQoL was assessed by the French version of the 36-Item Short Form Survey (SF-36) questionnaire. HRQoL determinants were identified using multivariable linear regression analysis. Results: In total, 570 participants were included, mostly women (68.9%), with a mean age of 33.3 (±10.7) years. The highest mean score HRQoL was found in the Physical functioning domain (67.5 ± 21.8) and the lowest mean score in the General Health perception domain (37.7 ± 20.3). The mean score of the physical composite (PCS) and mental composite (MCS) of SF-36 summary scores was 40.6 ± 8.9 and 45.3 ± 9.8, respectively. Participants receiving oxygen therapy (ß = -3.20 [95%CI: -5.56; -0.85]), those with a history of femoral osteonecrosis (-3.09 [-4.64; -1.53]), those hospitalized for vaso-occlusive crisis (VOC) or acute chest syndrome (ACS) (-2.58 [-3.93; -1.22]), those with chronic complications (-2.33 [-4.04; -0.62]), female participants (-2.17 [-3.65; -0.69]), those with psychological follow-up (-2.13 [-3.59; -0.67]), older participants (-1.69 [-3.28; -0.09]), and those receiving painkillers (-1.61 [-3.16; -0.06]) reported worse PCS score. By contrast, those who had completed secondary or high school (4.36 [2.41; 6.31]) and those with stable financial situation (2.85 [0.94, 4.76]) reported better PCS scores. Worse MCS scores were reported among participants with psychological follow-up (-2.54 [-4.28; -0.80]) and those hospitalized for VOC/ACS in the last 12 months (-2.38 [-3.99; -0.77]), while those who had relatives' support (5.27 [1.92; 8.62]) and those with stable financial situation (4.95 [2.65; 7.26]) reported better MCS scores. Conclusion: Adults with major SCD reported poor physical and mental HRQoL scores. Hospitalization for VOC/ACS, chronic complications, use of painkillers, perceived financial situation, and support from relatives are important predictors of HRQoL in SCD patients. Interventions to improve HRQoL outcomes SCD should be considered.

Disentangling the reasons why older adults do not readily participate in cancer trials: a socio-epidemiological mixed methods approach.

BACKGROUND: Few studies of the under-representation of older adults in cancer clinical trials (CTs) have encompassed the entire pathway from a trial being available in a cancer centre to the patient's invitation to participate and then agreement or refusal to participate. OBJECTIVES: The study's primary objective was to evaluate CT non-invitation and refusal rates. The secondary objectives were to identify factors associated with non-invitation and refusal and to assess experiences of CT participation from the patients' and professionals' perspectives. METHODS: Here, we used mixed methods and a socio-epidemiological approach to analyse reasons for the non-participation of eligible older patients with a solid cancer in cancer CTs in France. RESULTS: We found that non-invitation and low CT participation are mainly related to the patients' sociodemographic characteristics and living conditions (such as social isolation, being single, divorced or widowed, not having children and the absence of close family members) and the healthcare professionals' perceptions of insufficient informal support or a high homecare requirement. CONCLUSION: Our results suggest that efforts to increase fair inclusion and the participation of older adults in CTs should target the physician-patient relationship, the medical profession and hospital funding, rather than the patient alone.

Mapping the 'Ethical' Controversy of Human Heritable Genome Editing: a Multidisciplinary Approach.

Genome editing, for instance by CRISPR-Cas, is a major advancement of the last 10 years in medicine but questions ethically our practices. In particular, human embryo heritable genome editing is a source of great controversy. We explored how this ethical question was debated in the literature from PubMed database, in a period of 4 years (2016-2020) around the announcement of the 'CRISPR babies' Chinese experiment in November 2018. We evaluated the weight of the arguments for and against this topic, through an analysis of reviews published on this question. The most important arguments come from the technical perspective: safety issues and benefits, putative long-term effects on the future generations and the need to assess this aspect. Next, foreseeable clinical benefits and the alternatives to these methods are discussed. The number of people that would benefit from such techniques is also considered. However, social and anthropological issues are addressed in a more disparate way. Parenthood and desire for children are sometimes overlooked. Few authors mention social justice, stigmatisation and equality of access. Consent and information are more clearly addressed, as well as the question of the relationship between generations. Finally, the effects on the nature of humankind or human species are far from being consensual; the risks of enhancement, eugenics and transhumanism are raised. We conclude that the risks associated with the immaturity of the technique were at the forefront of the ethical debate on human embryo heritable genome editing. Their consequences were seen as more immediate and easier to handle than those of sociological or anthropological projections, which are more speculative in nature. Supplementary Information: The online version contains supplementary material available at 10.1007/s41649-022-00234-1.

[Therapeutic activism and health democracy: lessons from the fight against AIDS]. / Activisme thérapeutique et démocratie en santé : les leçons de la lutte contre le sida.

The "great AIDS patient revolt" had a major impact on the world of health care in Western countries. It is considered to be one of the social factors that led to the emergence of the notion of health democracy at the turn of the century. A look back at a historic struggle.

Including older patients in cancer trials: A qualitative study of collaboration between geriatricians and oncologists.

BACKGROUND: The under-representation of older patients in cancer trials remains an important obstacle to the generation of data on efficacy and safety in this growing patient population. In France, geriatric oncology coordination units (UCOGs) have been created to help oncologists and geriatricians work together on research, best practice, and continuing medical education. Taking these units as a case study, this paper sheds light on the collaboration between geriatricians and oncologists in the inclusion process of older patients in cancer trials. MATERIALS AND METHODS: Empirical data were gathered in a series of sociological interviews with all 16 oncologists, geriatricians and unit coordinators in the five UCOGs in the greater Paris region of France. RESULTS: The case of French geriatric oncology coordination units shows the gap between professional research cultures in oncology and geriatrics that may account for the low observed inclusion rates. It is easier to include patients in randomized clinical trials than in observational studies. UCOGs have the potential to improve research in geriatric oncology by catalyzing the development and implementation of effective collaboration tools (such as frailty assessments). The units also have the potential to promote Phase IV trials and observational research that are suitable for older patients with cancer. DISCUSSION: Bridging the cultural gap between oncologists (the dominant force in setting the cancer research agenda) and geriatricians (a source of specific knowledge and know-how) is essential for producing relevant trial protocols that match the specific yet diverse features of older patient populations.

Familial disclosure by genetic healthcare professionals: a useful but sparingly used legal provision in France.

Familial disclosure of genetic information is an important, long-standing ethical issue that still gives rise to much debate. In France, recent legislation has created an innovative and unprecedented procedure that allows healthcare professionals (HCPs), under certain conditions, to disclose relevant information to relatives of a person carrying a deleterious genetic mutation. This article will analyse how HCPs in two medical genetics clinics have reacted to these new legal provisions and show how their reticence to inform the patients' relatives on their behalf leads them to use this option sparingly.

Is there a "right time" for bad news? Kairos in familial communication on hereditary breast and ovarian cancer risk.

Time has long been considered as an important dimension of the process of disclosure of information about genetic risk to kin. The question of the "right time to tell" has been frequently noticed but seldom placed at the centre of the analyses of social scientists. Based on an ethnographical fieldwork in a French cancer genetics clinic, this article aims to show that many dimensions of the practical issues of disclosure to family can be fruitfully addressed through the temporal lens of kairos. Relying on the case of hereditary breast and ovarian cancer risk, it firstly highlights the existence of a mismatch between the "chronological" time of prevention proposed by professionals and the "kairological" time of disclosure lived by informants. Secondly, it emphasizes the problematic nature of the pragmatic approach of time associated with kairos. On the one hand one can draw some benefits from seeking the right time to inform relatives, but on the other hand waiting on uncertain opportunities to disclose such information can make communication even more difficult.

Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics.

Disclosure of genetic information within families is one of the longstanding questions under scrutiny in the field of genetics. Most of the probands entrusted with family disclosure succeed in this task, but there are still many problematic cases where it proves difficult. How can professionals help probands disclose this information? What levers can they activate to foster the diffusion of genetic information within families? In the context of a new legal framework concerning this question in France, this paper offers a comprehensive view of the process of genetic counselling in a cancer genetics department. Based on an ethnographic study, it focuses on the interactions between professionals and probands during each step of the testing procedures in order to identify key times when the issue can be addressed. The results show that the question of family disclosure needs to be addressed before, during and after the test. Greater awareness of this continuum among professionals could help them foster family disclosure by supporting the probands at each stage of the testing procedure.