BRCA carriers after risk-reducing bilateral salpingo-oophorectomy: menopausal hormone therapy knowledge gaps, and the impact of physicians' recommendations.

OBJECTIVE: Female carriers of BRCA1/2 gene mutations are at an increased lifetime risk for breast and ovarian cancers. They are recommended to undergo risk-reducing surgery, including bilateral salpingo-oophorectomy (RR-BSO), upon completion of childbearing. RR-BSO surgery decreases morbidity and mortality but results in early menopause. Menopausal hormone therapy (MHT) is under-utilized despite being shown as safe for carriers. We aim to evaluate the factors associated with decision-making regarding MHT use following RR-BSO in healthy BRCA mutation carriers. METHODS: Female carriers aged <50 years who underwent RR-BSO and were followed in a multidisciplinary clinic completed online multiple-choice and free-text questionnaires. RESULTS: A total of 142 women met the inclusion criteria and filled the questionnaire: 83 were MHT users and 59 were non-users. MHT users underwent RR-BSO earlier than non-users (40.82 ± 3.91 vs. 42.88 ± 4.34; p < 0.0001). MHT usage was positively associated with MHT explanation (odds ratio 4.318, 95% confidence interval [CI] [1.341-13.902], p = 0.014), and knowledge regarding the safety of MHT and its effects on general health (odds ratio 2.001, 95% CI [1.443-2.774], p < 0.0001). MHT users and non-users retrospectively evaluated their comprehension of RR-BSO consequences as significantly lower than before surgery (p < 0.001). CONCLUSION: Post-RR-BSO outcomes, including the effects on women's quality of life and its possible mitigation through MHT use, need to be addressed pre surgery by healthcare providers.

'Why have women not returned to use their frozen oocytes?': a 5-year follow-up of women after planned oocyte cryopreservation.

RESEARCH QUESTION: What are the reproductive choices and retrospective reflections of women at least 4 years after planned oocyte cryopreservation (POC)? DESIGN: This was an internet survey, using the REDCap application, of women who underwent POC, at a single-centre university-affiliated IVF unit, 4-8 years before the survey. The questionnaire addressed reproductive choices and outcomes following POC. RESULTS: Seventy-nine women who underwent POC during 2011-2014 were invited to participate, and 70 (89%) responded. Mean age at cryopreservation was 37.1 ± 2.4 (range 30-41) years, mean age at study participation 42.6 ± 2.6 (range 35-48) years, and mean time from first cryopreservation cycle to study participation 5.5 ± 1.3 (range 4-8) years. The main retrospectively reported reason for POC was not wanting to become pregnant without a partner (59, 84%). During the follow-up period, 44 women (63%) attempted to conceive either naturally or by assisted reproductive technology using fresh or cryopreserved oocytes. Of those, 28 women achieved a live birth (64% of those who tried to conceive). Fourteen respondents (20% of all respondents) reported using their cryopreserved oocytes, and three (21%) achieved a birth using those oocytes. Fifteen women (34%) of those who tried to conceive used donor spermatozoa. CONCLUSIONS: The most common reasons for not using frozen oocytes were achieving pregnancy without frozen oocytes or preferring not to have a child without a partner. A considerable proportion of women who had POC and were not interested in being a single parent by choice eventually try to conceive using donor spermatozoa several years later.

Big Data in Science and Healthcare: A Review of Recent Literature and Perspectives. Contribution of the IMIA Social Media Working Group.

OBJECTIVES: As technology continues to evolve and rise in various industries, such as healthcare, science, education, and gaming, a sophisticated concept known as Big Data is surfacing. The concept of analytics aims to understand data. We set out to portray and discuss perspectives of the evolving use of Big Data in science and healthcare and, to examine some of the opportunities and challenges. METHODS: A literature review was conducted to highlight the implications associated with the use of Big Data in scientific research and healthcare innovations, both on a large and small scale. RESULTS: Scientists and health-care providers may learn from one another when it comes to understanding the value of Big Data and analytics. Small data, derived by patients and consumers, also requires analytics to become actionable. Connectivism provides a framework for the use of Big Data and analytics in the areas of science and healthcare. This theory assists individuals to recognize and synthesize how human connections are driving the increase in data. Despite the volume and velocity of Big Data, it is truly about technology connecting humans and assisting them to construct knowledge in new ways. Concluding Thoughts: The concept of Big Data and associated analytics are to be taken seriously when approaching the use of vast volumes of both structured and unstructured data in science and health-care. Future exploration of issues surrounding data privacy, confidentiality, and education are needed. A greater focus on data from social media, the quantified self-movement, and the application of analytics to "small data" would also be useful.

Social Media for the Promotion of Holistic Self-Participatory Care: An Evidence Based Approach. Contribution of the IMIA Social Media Working Group.

OBJECTIVES: As health information is becoming increasingly accessible, social media offers ample opportunities to track, be informed, share and promote health. These authors explore how social media and holistic care may work together; more specifically however, our objective is to document, from different perspectives, how social networks have impacted, supported and helped sustain holistic self-participatory care. METHODS: A literature review was performed to investigate the use of social media for promoting health in general and complementary alternative care. We also explore a case study of an intervention for improving the health of Greek senior citizens through digital and other means. RESULTS: The Health Belief Model provides a framework for assessing the benefits of social media interventions in promoting comprehensive participatory self-care. Some interventions are particularly effective when integrating social media with real-world encounters. Yet not all social media tools are evidence-based and efficacious. Interestingly, social media is also used to elicit patient ratings of treatments (e.g., for depression), often demonstrating the effectiveness of complementary treatments, such as yoga and mindfulness meditation. CONCLUSIONS: To facilitate the use of social media for the promotion of complementary alternative medicine through self-quantification, social connectedness and sharing of experiences, exploration of concrete and abstract ideas are presented here within. The main mechanisms by which social support may help improve health - emotional support, an ability to share experiences, and non-hierarchal roles, emphasizing reciprocity in giving and receiving support - are integral to social media and provide great hope for its effective use.

Parents' decision following the Food and Drug Administration recommendation: the case of over-the-counter cough and cold medication.

BACKGROUND: In 2007, the Food and Drug Administration (FDA) recommended against parents administering over-the-counter cough and cold medications (OTC-CCM) to children under 2 years of age because serious and potentially life-threatening side effects can occur. This study examined the impact of FDA's recommendations against giving children under 2 years old OTC-CCM. METHODS: We asked parents (n= 377) whether they knew of and trusted the FDA recommendations, as well as whether they intended to follow them. We also examined parents' knowledge, perceptions and behaviours with respect to OTC-CCM. RESULTS: About 33% of our sample had never heard of the FDA recommendations. Of those who were aware, 32.9% intended to continue administering OTC-CCM, and another 36.7% were not sure what to do. Our results indicate that parents who trust the FDA recommendations are significantly more likely to stop giving OTC-CCM to their children. However, almost half did not trust the FDA recommendations or were not sure whether to trust them. Our results indicate that parents who trust the FDA recommendation are significantly more likely to discontinue using OTC-CCM. Our data also reveal that many parents give more than one drug simultaneously (32.9%), cannot identify the active ingredient(s) (28.9%) or fail to store the medications in a safe place (86.1%). CONCLUSION: Parents' confidence in the FDA recommendations predicted whether they would continue or stop administering OTC-CCM to their children. Our findings illustrate the urgent need for widespread public education about OTC-CCM products to ensure children's safety.