Raolindgaard3482
Aim In families with a child diagnosed with spinal muscular atrophy (SMA), siblings who do not have SMA could still be genetic carriers of the condition. This study is the first to explore how siblings of patients with SMA learn about the condition and their genetic risk. Method In-depth, semi-structured interviews were conducted with several parents and unaffected siblings of people with SMA types II and III in Australia. Thematic analysis was performed. Results Siblings described learning about SMA gradually over time through conversations with their parents and other sources, including the Internet, biology classes and support groups. Parents and unaffected siblings described challenges in family communication due to the emotional intensity associated with having SMA in the family. Most siblings did not report learning from their family how the inheritance of SMA related to their own genetic carrier risk and possible reproductive implications. Conclusion Siblings described their parents as being open and honest in communicating about SMA; however, this study found that communication before the age of understanding abstract concepts, in combination with the emotional intensity of SMA, resulted in gaps in knowledge about SMA.Approximately 25% of new breast cancers are diagnosed in premenopausal patients, 50%-70% presenting as estrogen receptor-positive (ER+) breast tumors. Five-year adjuvant endocrine therapy (ET) with Tamoxifen is the cornerstone treatment for those patients but the evidence that up to 50% of ER + breast cancer distant recurrences develop after this time has now raised some questions. ATLAS and aTTom trials are the only two studies addressing the extension of Tamoxifen beyond 5 years in premenopausal patients. They showed significant DFS and OS benefits at a cost of increased rates of endometrial cancer and pulmonary embolus. Therefore, the selection of the patients at higher recurrence risk and hence deemed to get the most benefit from an extended endocrine therapy has become a major concern. Many clinical and genomic prognostic tools have shown validity in identifying patients at high late recurrence risk, but only the BCI prognostic score was shown to also be predictive of response to extended endocrine therapy. Nevertheless, all the evidence available on extended endocrine therapy in premenopausal patients was derived from trials in which patients were treated with tamoxifen alone and are hardly applicable to the current clinical scenario. In fact, the results of the SOFT and TEXT trials demonstrated the superiority of the addition of ovarian function suppression (OFS) and its association with the aromatase inhibitor (AI) Exemestane to Tamoxifen alone. However, the introduction in the clinical practice of AI + OFS-based endocrine therapy for the premenopausal patients will very soon lead to an impasse since neither data exist on extended therapy after this treatment schedule nor is there an ongoing trial intended to obtain new evidence.Background Supporting people to self-manage their long-term conditions is a UK policy priority. Health coaching is one approach health professionals can use to provide such support. There has been little research done on how to train clinicians in health coaching or how to target training to settings where it may be most effective. Objective To develop theories to describe how training health professionals in health coaching works, for whom and in what circumstances, with a focus on those working with people with progressive neurological conditions. Design Realist evaluation using mixed methods (participant observation, pre- and post-training questionnaires, and telephone interviews with participants and trainers). Realist data analysis used to develop and refine theories. Intervention Two 1-day face-to-face training sessions in health coaching with 11 weeks between first and second days. Setting and participants Twenty health-care professionals who work with people with neurological conditions in the UK, two training facilitators. Results Four theories were developed using context-mechanism-outcome configurations to describe how training triggers critical reflection; builds knowledge, skills and confidence; how participants evaluate the relevance of the training; and their experiences of implementing the training. Ruboxistaurin PKC inhibitor Some participants reported a major shift in practice, and others implemented the training in more limited ways. Discussion Fully embracing the role of coach is difficult for health professionals working in positions and settings where their clinical expertise appears most highly valued. Conclusions Training should address the practicality of using coaching approaches within existing roles, while organizations should consider their role in facilitating implementation.We examined the relationships between sleep and inflammatory biomarkers during late pregnancy. Seventy-four women underwent an overnight sleep assessment by polysomnography. Blood samples were collected before bedtime and again within 1 h upon awakening to measure C-reactive protein (CRP), interleukin (IL)-6, and IL-6 soluble receptor. Sleep parameters included variables characterizing sleep architecture and sleep continuity. The participants were 32.2 (SD = 4.1) years old, and the average gestational age was 32.8 (3.5) weeks. Controlling for covariates, evening CRP was negatively associated with N3 sleep (β = -0.30, P = 0.010). N3 sleep was also negatively associated with morning CRP (β = -0.26, P = 0.036), with a higher percentage of N3 sleep associated with a lower level of morning CRP. Contrarily, there was a tendency for a positive association between stage N2 sleep and morning CRP (β = 0.23, P = 0.065). Stage N1 sleep was associated with morning IL-6 (β = 0.28, P = 0.021), with a higher percentage of N1 sleep associated with a higher morning IL-6. No significant associations were found between morning inflammatory biomarkers and sleep continuity parameters. In conclusion, increased light sleep was associated with increased inflammatory biomarkers, whereas more deep sleep was associated with decreased inflammatory biomarkers. These findings further support the interactions between sleep and the immune system during late pregnancy.