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51.
Introduction: Reproductive health problems are the leading cause of women's morbidity and mortality worldwide. In the United States, officially sponsored refugee women continue to face challenges in accessing reproductive health programs despite having access to health insurance. Methods: The objective of this study was to explore the reproductive health experiences of 1 such population—Somali Bantu women in Connecticut—to identify potential barriers to care experienced by marginalized populations. The study was qualitative, consisting of key informant interviews, a focus group session, and a semistructured survey. Results: Although all the women in the study reported having access to reproductive health care services, they also reported having unmet health needs resulting from barriers to care that included ethnic distinction/language barriers, passive acceptance of incorrect care, cultural discordance in family planning services, patient‐provider sex discordance, and desire but limited scope for ownership in health care outcomes. The root cause of the various types of patient‐provider discordance was the lack of recognition that the Somali Bantu are distinct in culture, language, and solidarity from ethnic Somalis, resulting in Language Line translation services being conducted in a Somali language that the Somali Bantu women did not understand. Discussion: The results of the study primarily highlight the larger issue of information asymmetry within the health care system that, if left unaddressed, will persist as new vulnerable populations of refugees arrive in the United States.  相似文献   
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The classical form of late infantile neuronal ceroid lipofuscinosis is a childhood hereditary neurodegenerative disease usually fatal in the first decade of life. We report a two-year-old Tunisian boy who presented this form of ceroid lipofuscinosis. A febrile seizure was the presenting symptom without psychomotor delay. Magnetic resonance imaging of the brain showed mild cerebellar atrophy. Fundus oculi showed bilateral posterior polar cataract, which is a new finding in the classical form of late infantile neuronal ceroid lipofuscinosis. A homozygous R208X mutation was identified in the NLC2 gene. On follow up, this patient presented with myoclonic epilepsy and regression of acquired milestones.  相似文献   
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Xeroderma pigmentosum is a rare autosomal recessive disease characterized by hypersensitivity to UV light which is due to alterations of the nucleotide excision repair pathway. Eight genes (XPA to XPG and XPV) are responsible for the disease. Among them, the XPC gene is known to be the most mutated in Mediterranean patients. The aim of this study was to determine the frequency of the most common XPC mutation and describe the clinical features of Moroccan patients with xeroderma pigmentosum. Twenty four patients belonging to 21 unrelated Moroccan families and 58 healthy subjects were investigated. After clinical examination, the screening for the c.1643_1644delTG (p.Val548AlafsX25) mutation in the XPC gene was performed by PCR and automated sequencing of exon 9 in all patients and controls. The molecular analysis showed that among the 24 patients, 17 were homozygous for the c.1643_1644delTG mutation and all their tested parents were heterozygous, whereas the others (7 patients) did not carry the mutation. The frequency of this mutation was estimated to be 76.19 % (16/21 families). None of the 58 healthy individuals carried this mutation. In addition, clinical investigation showed that the majority of the patients bearing this mutation have the same clinical features. Our results revealed that the p.Val548AlafsX25 mutation is the major cause (76.19 %) of xeroderma pigmentosum in Moroccan families. This would have an important impact on improving management of patients and their relatives.  相似文献   
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BACKGROUND: The minor salivary glands biopsy is a very common diagnostic procedure in oral medicine rather its efficiency has not been statistically proved. AIM: Assessment of Rabta pathologic department experience METHODS: 297 biopsies have been studied with special attention to the suspected diagnosis before biopsy and the final histologic result. RESULTS: The minor salivary gland biopsy confirmed the initial diagnosis in 78 cases. Although if the minor salivary gland biopsy is in most cases not contributively, it is a very simple procedure which gives the diagnosis of Gougerot-Sjogren disease, amylosis and sarcoidosis.  相似文献   
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Background

In primary care maternal and child health clinics in occupied Palestinian territory, documentation and reporting consume considerable time for care providers. An electronic maternal and child health registry (MCH eRegistry), with point-of-care clinical decision support, is being implemented nationally in governmental clinics. We conducted a pilot study of time spent by care providers on important tasks, in preparation for a trial to compare eRegistry and non-eRegistry clinics.

Methods

We conducted semi-structured interviews of ten nurse-midwives from six governmental clinics in the West Bank to map clinical workflows, and developed a data collection tool for time-motion observations. In May, 2017, observers recorded one workday in three eRegistry and three non-eRegistry clinics. For each consultation, we calculated the median time spent (in minutes) on each task, and then compared time spent in eRegistry and non-eRegistry clinics using Wilcoxon rank-sum tests. Ethics approvals were obtained from the Palestinian Health Research Council and Regional Ethics Committee, Norway. Informed consent was obtained from all pregnant women.

Findings

Twelve antenatal consultations (four first booking visits, eight follow-up visits) were observed in eRegistry clinics and 39 (four first visits, 35 follow-up visits) in non-eRegistry clinics. The median duration of booking visits was 19·9 min (IQR 12·9) in eRegistry clinics and 22·1 min (24·9) in non-eRegistry clinics. In eRegistry clinics, the median duration of follow-up visits was 14·6 min (17·3), of which the median clinical examination time was 1·7 min (0·6) and median health information management time was 5·3 min (5·8). In non-eRegistry clinics, the median duration of follow-up visits was 8·8 min (8·7), of which the median clinical examination time was 2·5 min (2·9) and health information management time was 4·6 min (2·0). This pilot study was not sized for comparisons; health information management time was not statistically different between groups (p=0·1).

Interpretation

Health information management constituted large parts of limited antenatal consultation time. The pilot provided data to estimate that the upcoming trial must include a sample of 24 clinics and 210 observations, with similar proportions of booking and follow-up consultations in both arms, to observe meaningful differences in time consumption with sufficient statistical power.

Funding

European Research Council and Research Council of Norway.  相似文献   
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Acute postinfectious glomerulonephritis are defined by an acute nonsuppurative inflammatory insult predominantly glomerular. Its current incidence is uncertain because of the frequency of subclinical forms. The most common infectious agent involved is beta hemolytic streptococcus group A. Acute postinfectious glomerulonephritis is uncommon in adults, and its incidence is progressively declining in developed countries. Humoral immunity plays a key role in the pathogenesis of kidney damage. Complement activation by the alternative pathway is the dominant mechanism, but a third way (lectin pathway) has been recently identified. The classic clinical presentation is sudden onset of acute nephritic syndrome after a free interval from a streptococcal infection. Treatment is essentially symptomatic and prevention is possible through improved hygiene and early treatment of infections.  相似文献   
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Three hundred and twenty‐seven patients from two population‐based cohorts with an established diagnosis of polycythaemia vera were studied for prognostic risk factors for survival and leukaemia in a long‐term survey. The relative survival (RS) was 72% and 46% at 10 and 20 years respectively, from the time of diagnosis. Multivariate analysis identified age >70 years, white blood cell count >13 × 109/l and thrombo‐embolism at diagnosis as independent risk factors. Patients with two or three of these factors had a 10 year RS of 26%, compared with 59% and 84% in patients with one and no risk factors, respectively. Age and leucocyte count are the main predicting factors for survival in polycythaemia vera.  相似文献   
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