Female partners of patients after surgical prostate cancer treatment: interactions with physicians and support needs

<p>Abstract</p> <p>Background</p> <p>Few studies have explored the women's experiences as a result of a partners' diagnosis of prostate cancer. This study begins to explore women's interactions with physicians (primary care and urologist) and the support needs associated with the diagnosis and treatment of their partners' prostate cancer.</p> <p>Methods</p> <p>Two focus groups (n = 14) of women whose partners were diagnosed with prostate cancer (diagnoses' 1 - 18 months). A trained facilitator used open-ended questions to explore ideas. The framework approach was used to analyze the transcripts.</p> <p>Results</p> <p>Three main themes emerged: 1. <b>More support</b>. Validation and information is needed for women including emotional support and opportunities to share experiences. 2. <b>Role of the physician</b>. The transfer of care once specialized treatment is no longer needed remained poorly defined, which increased confusion and feelings of abandonment related to the role of the primary physician. 3. <b>Partners' relationship changes</b>. Men became more dependent on their partners for support and to act as the primary communicator and caregiver.</p> <p>Conclusions</p> <p>Additional research is needed in this field to confirm the importance of training primary care physicians to consider holistic treatment approaches that recognize the partner and family needs as important in the complete physical and emotional healing of their patients.</p

Гнойный гидраденит. Часть II

Purulent hydradenitis is a chronic relapsing disease that affects 4% of the population, caused by uncontrolled growth of hair follicle and apocrine gland cells, which leads to the development of autoimmune and then septic inflammation. The provoking factors are obesity, smoking, formation of apocrine glands in the body. The variety of subordinates of Suppurative hydradenitis, differences in the prognosis and course of the disease, as well as the need to manage patients with this pathology in the surgical department, determine the standardization of the therapeutic algorithm and the objectification of the degree of clinical response to the therapy using scoring scales.Гнойный гидраденит — хроническое рецидивирующее заболевание, поражающее 4% населения, причиной которого является неконтролируемый рост клеток волосяного фолликула и апокриновой железы, что приводит к развитию аутоиммунного, а затем септического воспаления. Провоцирующими факторами являются ожирение, курение, формирование апокриновых желез в организме. Многообразие субтипов гнойного гидраденита, различия в прогнозе и течении заболевания, а также необходимость ведения пациентов с данной патологией в хирургическом отделении обусловливают стандартизацию терапевтического алгоритма и объективизацию степени клинического ответа на проводимую терапию с помощью оценочных шкал

Гнойный гидраденит. Часть I

Until recently, the pathogenesis of purulent hidradenitis was a little- and sporadically studied issue, which invariably created difficulties in the therapeutic treatment of this disease. Its often severe recurrency rate, high incidence and the lack of effective treatment have predetermined the urgency of the problem and raised the scientific and practical interest in this field among the scientists worldwide. Recent data indicate a significant role of damage-associated molecular patterns (DAMP) and the activation of congenital immunity, associated with Th17 lymphocytes, in the development of inflammatory disease. Likewise, the violation of the transmission of the cellular Notch signaling pathway plays an important role in the development of purulent hidradenitis. До недавнего времени патогенез гнойного гидраденита являлся малоизученной и нерешенной проблемой, что неизменно создавало трудности в терапии этого заболевания. Зачастую тяжелое рецидивирующее течение, высокая частота встречаемости и отсутствие эффективного лечения предопределили актуальность проблемы и обусловили научно-практический интерес ученых всего мира в этой области. Последние данные свидетельствуют о существенной роли в развитии заболевания воспалительных молекул DAMP и активации врожденного иммунитета, связанного с Тh17-лимфоцитами. Немаловажную роль в развитии гнойного гидраденита также играет нарушение передачи клеточного сигнала Notch-пути.

At-Risk Phenotype of Neurofibromatose-1 Patients: A Multicentre Case-Control Study

<p>Abstract</p> <p>Objectives</p> <p>To assess associations between subcutaneous neurofibromas (SC-NFs) and internal neurofibromas in patients with neurofibromatosis type 1 (NF-1) and to determine whether the association between SC-NFs and peripheral neuropathy was ascribable to internal neurofibromas.</p> <p>Patients and methods</p> <p>Prospective multicentre case-control study. Between 2005 and 2008, 110 NF-1 adults having two or more SC-NFs were individually matched for age, sex and hospital with 110 controls who had no SC-NF. Patients underwent standardized MRI of the spinal cord, nerve roots and sciatic nerves and an electrophysiological study. Analyses used adjusted multinomial logistic regression (ORa) to estimate the risk of the presence of internal neurofibromas or peripheral neuropathies associated with patients presented 2 to 9 SC-NFs, at least 10 SC-NFs as compared to patients without any (referential category).</p> <p>Results</p> <p>Cases had a mean age of 41 (± 13) years; 85 (80%) had two to nine SC-NFs and 21 (19%) at least ten SC-NFs. SC-NFs were more strongly associated with internal neurofibromas in patients with ten or more SC-NFs than in patients with fewer NF-SCs (e.g., sciatic nerve, aOR = 29.1 [8.5 to 100] vs. 4.3 [2.1 to 9.0]). The association with SC-NFs was stronger for diffuse, intradural, and > 3 cm internal neurofibromas than with other internal neurofibromas. Axonal neuropathy with slowed conduction velocities (SCV) was more strongly associated with having at least ten SC-NFs (aOR = 29.9, 5.5 to 162.3) than with having fewer SC-NFs (aOR = 4.4, 0.9 to 22.0). Bivariate analyses showed that the association between axonal neuropathy with SCV and sciatic neurofibromas was mediated by the association between SC-NFs and sciatic neurofibromas.</p> <p>Conclusion</p> <p>The at-risk phenotype of NF-1 patients (i.e. NF-1 patients with SC-NFs) is ascribable to associations linking SC-NFs to internal neurofibromas at risk for malignant transformation and to axonal neuropathies with slowed conduction velocities. Axonal neuropathies with SCV are particularly common in patients with at least ten SC-NFs.</p> <p>Registration details</p> <p>ORPHA86301</p

Antitumour necrosis factor-α therapy for hidradenitis suppurativa: results from a national cohort study between 2000 and 2013

International audienceHidradenitis suppurativa (HS) is a frequent chronic inflammatory skin disease typically characterized by recurrent painful, deep inflammatory nodules of the axillary, breast, groin and gluteal areas. European recommendations are mainly based on expert opinion. Drug treatments are heterogenous (e.g., antibiotics, corticosteroids, retinoids) and lack consensus among expert centres. The most severe disease forms or those failing to respond to conventional drugs may be associated with worsened functional prognosis. Anti-tumor necrosis factor α (anti-TNFα) drugs have been prescribed in these cases. The results of randomized controlled trials (RCTs) are discordant. Three RCTs concluded to the efficacy of adalimumab (ADA), and two others did not detect any difference between infliximab (IFX) or etanercept (ETA) and placebo. Finally, data from the literature and reported experiences do not conclude on the efficacy of anti-TNFα drugs for HS. This article is protected by copyright. All rights reserve

Обмен мнениями по поводу статьи Мартина Мюллера «Разыскивая глобальный Восток»

This section presents exchanges between intellectuals from Eastern and Western Europe, Russia, and North America who kindly agreed to read and comment on Martin Mueller’s article “In Search of the Global East”, relying on the situation in their own academic disciplines, work experiences, and the twists and turns of their scientific research and creative challenges. Researchers, academic teachers, exhibition curators, writers, and architects reflect on the power and influence which geographical names exert on academic life, politics, and culture. Starting from Mueller’s article on the Global East, as well as his other text wherein he expresses his skepticism of the concept of post-socialism, the commentators, evaluating Mueller’s arguments critically, raise a number of fundamental questions. Among these questions is the need to historicize scientific concepts, the issue of the regularly-reproducible misunderstanding (or even exclusion) of the East by Western intellectuals, the tasks the inclusion of the Global East in the overall geographical picture will contribute to, as well as the question of whether the concern that the Global East is not sufficiently heard in the world is narrowly academic. This indirect debate between the author of the key text in this thematic issue and his commentators is significant as an episode of the joint search for a more democratic, creative, and inspiring future for the region that unites Eastern Europe, Russia, and Central Asia. © 2020, RUSSIAN SOCIOLOGICAL REVIEW. All rights reserved

The Role of Appearance in Adolescents’ Experiences of Neurofibromatosis Type 1: A Survey of Young People and Parents

© 2016, National Society of Genetic Counselors, Inc. Neurofibromatosis type 1 (NF1) is a genetic condition which can result in varying degrees of visible difference (disfigurement). Adolescence is a time when appearance concerns become more salient for many young people and is acknowledged as a particularly challenging time for individuals with NF1. There is currently little research into the psychosocial impact of the appearance changes associated with NF1 during this stage of life. In order to address this, surveys of young people with NF1 aged 14–24years (n=73), and parents of young people with NF1 (n=55) were developed following interview studies with these groups. The surveys included the Perceived Stigma Questionnaire, Social Comfort Questionnaire, Body Esteem Scale (appearance subscale) and the Subjective Happiness Scale. Young people and parents identified appearance as central to young peoples’ experience of NF1, however no significant difference was found on measures of body esteem, happiness, stigma or social comfort between those young people who reported their NF1 was noticeable to others and those who reported it was not. Findings from the parent survey indicated that their reports of greater perceived noticeability did relate to greater perceived stigma and lower levels of social comfort. Findings highlight the importance of attending to young people’s concerns around appearance in general and managing the possibility of future appearance changes, rather than the current noticeability of NF1

Evaluation of quality of life in adults with neurofibromatosis 1 (NF1) using the Impact of NF1 on Quality Of Life (INF1-QOL) questionnaire

Background Neurofibromatosis 1 (NF1) is an inherited, multi-system, tumour suppressor disorder with variable complications that cause psychological distress and social isolation. The study aim was to develop and validate a disease-specific questionnaire to measure quality of life (QOL) in NF1 that is suitable both as an assessment tool in clinical practice and in clinical trials of novel therapy. Methods The Impact of NF1 on Quality of Life (INF1-QOL) questionnaire was developed by a literature search for common terms, focus group (n=6), semi-structured interviews (n=21), initial drafts (n =50) and final 14 item questionnaire (n=50). Bivariate correlations between items, exploratory factor analysis, correlations with severity and EuroQol were employed. Results INF1-QOL showed good internal reliability (Cronbach’s alpha 0.87), mean total INF1-QOL score was 8.64 (SD 6.3), median 7.00, range 0-30 (possible range 0-42); no significant correlations with age or gender. The mean total EuroQol score was 7.38 (SD 2.87), median 6.5, mean global EuroQol score was 76.34 (SD 16.56), median 80. Total INF1-QOL score correlated with total EuroQol r=0.82, p<0.0001. The highest impact on QOL was moderate or severe problems with anxiety and depression (32%) and negative effects of NF1 on role and outlook on life (42%). The mean inter-relater reliability for grading of clinical severity scores was 0.71 (range 0.65-0.79), and intra-class correlation was 0.92. The mean clinical severity score was 1.95 (SD 0.65) correlating r=0.34 with total INF1-QOL score p<0.05 and correlated 0.37 with total EuroQol score p<0.01. The clinical severity score was mild in 17 (34%), moderate in 16 (32%) and 17 (34%) individuals had severe disease. Conclusions INF1-QOL is a validated, reliable disease specific questionnaire that is easy and quick to complete. Role and outlook on life and anxiety and depression have the highest impact on QOL indicating the variability, severity and unpredictability of NF1. INFI-QOL correlates moderately with clinical severity. The moderate relationship between INF1-QOL and physician rated severity emphasizes the difference between clinical and patient perception. INFI-QOL will be useful in individual patient assessment and as an outcome measure for clinical trials

Breast cancer in neurofibromatosis 1: survival and risk of contralateral breast cancer in a five country cohort study

PurposeNeurofibromatosis 1 (NF1) is an autosomal dominant condition caused by pathogenic variants of the NF1 gene. A markedly increased risk of breast cancer is associated with NF1. We have determined the breast cancer survival and risk of contralateral breast cancer in NF1.MethodsWe included 142 women with NF1 and breast cancer from five cohorts in Europe and 335 women without NF1 screened for other familial breast cancers. Risk of contralateral breast cancer and death were assessed by Kaplan–Meier analysis with delayed entry.ResultsOne hundred forty-two women with NF1 were diagnosed for breast cancer at a median age of 46.9 years (range 27.0–84.3 years) and then followed up for 1235 person-years (mean = 8.70 years). Twelve women had contralateral breast cancer with a rate of 10.5 per 1000 years. Cumulative risk for contralateral breast cancer was 26.5% in 20 years. Five and 10-year all-cause survival was 64.9% (95% confidence interval [CI] = 54.8–76.8) and 49.8% (95%CI = 39.3–63.0). Breast cancer–specific 10-year survival was 64.2% (95% CI = 53.5–77.0%) compared with 91.2% (95% CI = 87.3–95.2%) in the non-NF1 age-matched population at increased risk of breast cancer.ConclusionWomen with NF1 have a substantial contralateral breast cancer incidence and poor survival. Early start of breast cancer screening may be a way to improve the survival.</p