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41.
Janet L. Williams Alanna Kulchak Rahm Doris T. Zallen Heather Stuckey Kara Fultz Audrey L. Fan Michele Bonhag Lynn Feldman Michael M. Segal Marc S. Williams 《Journal of genetic counseling》2018,27(2):358-369
“The objective of this study was to” test the effectiveness of an enhanced genomic report on patient-centered outcome domains including communication, engagement and satisfaction. “Study design utilized” a prospective, randomized, mixed-methods desctiptive study of a whole genome sequencing results report, GenomeCOMPASS?, that was accessed by providers through the electronic health record and by patients through the associated patient portal. “The study was set in” an integrated healthcare delivery system in central Pennsylvania. “Eighty-four” parents of 46 children with undiagnosed Intellectual Disability, Autism Spectrum Disorder and/or multiple congenital anomalies who had participated in a previous study offering whole genome sequencing for their affected child were invited to enroll. Fifty-two parents enrolled. Following a traditional genetics results informing visit, the study coordinator stratified families by diagnostic result and uninformative result and then randomized families within each group to an intervention arm to receive the GenomeCOMPASS? report or to the usual care arm to receive a summary letter from the medical geneticist. A letter inviting enrollment included a baseline survey, which once returned, constituted enrollment. Surveys were administered at 3 months post-genetics visit. At 6 months, the usual care arm crossed over to receive the intervention and were administered an additional survey at 3 months. Qualitative interviews were conducted following survey completion to augment the survey data regarding the patient centered outcomes of interest. Patient reported outcomes including communication, engagement, empowerment and satisfaction. In the intervention arm, GenomeCOMPASS? reports were released to 14 families (N?=?28 parents) and of those 21 (75%) returned 3 month surveys. In the usual care arm, 12 families (N?=?24 parents) received usual care summary letters and of those 20 (83%) returned 3 month surveys. At crossover, GenomeCOMPASS? reports were released to 20 individuals and 15 (75%) returned 3 month surveys. Qualitative interviews were conducted with 5 individuals. Use of the GenomeCOMPASS? report was reported by this small group of parents to improve communication with providers and non-health professionals such as educators and therapists and led to increased engagement and high satisfaction. Providers and others involved in the children’s care also endorsed the report’s effectiveness. Reports that addressed negative findings, i.e. uninformative results, were not found to be useful. Although the number of users was small, this study supports that customizable template reports may provide a useful and durable source of information that can support and enhance the information provided by genetics professionals in traditional face-to-face encounters. Trial registration: Clinicaltrials.gov (Record 2013–0594). 相似文献
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Four-phonon model of soft-matter quasicrystals is proposed, in which there are three solid phonons and one fluid phonon. With this model, the vibration spectrum of soft-matter quasicrystals can be obtained. The generalized Debye frequency, generalized Debye temperature and the thermodynamic functions of soft-matter quasicrystals are observed. The results on the specific heat of soft-matter quasicrystals demonstrate the contributions of both solid phonons and fluid phonon, respectively. 相似文献
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鼻咽癌是我国高发恶性肿瘤之一,发病率为头颈部恶性肿瘤之首。鼻咽癌对放疗、化疗均敏感。单纯的放射治疗虽然能够使早期患者获得很好的局部控制率,但是对于局部晚期患者而言,其5年生存率难以令人满意,治疗失败主要是因为区域复发和远处转移。化学治疗对放疗起到了补充作用,临床应用目前主要有同期化疗、辅助化疗、诱导化疗三种。本文对过去20年间化疗在局部晚期鼻咽癌治疗中的应用归纳总结。 相似文献
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Ruth Mei-tai Fan H.L. Wagner Antony S.R. Manstead 《Basic and applied social psychology》2013,35(1-2):83-96
Anchoring in judgments is the tendency for the final judgment to be biased toward the initial estimate through insufficient adjustment. In the context of the detection of deception, it has been used to explain phenomena such as negative absolute leakage and the truthfulness bias. We examined the influence of order of judgment type on attitude ratings, accuracy, and the truthfulness bias. Receivers of communications should tend to anchor their judgments on the sender's attitudinal position if asked to make attitude judgments first and on the sender's behavior if asked to make truthfulness judgments first. The results partly support these predictions. Negative absolute leakage, accuracy, and the truthfulness bias were not significantly different for those who made attitude judgments before truthfulness judgments. However, results show that accuracy decreased as the session continued and there was no difference in the confidence with which truth and deception judgments were made, but there was a positive relation between confidence and truthfulness bias. 相似文献
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Fanny M. Cheung Sarah L.Y. Wan Weiqiao Fan Frederick Leong Peter C.H. Mok 《Journal of Vocational Behavior》2013,83(3):237-244
This study extended the concept of collective efficacy to supplement the variable of career self-efficacy to predict vocational exploration and commitment among adolescents. We developed a Collective Contributions to Career Efficacy Scale (CCCE) to measure adolescents' perceived contributions from parents, teachers, and peers on their career-related matters. A total of 1175 high school students from Hong Kong, Shanghai and Michigan participated in the study by completing the CCCE, the Career Decision Self-Efficacy Scale (CDSE-SF), and the Vocational Exploration and Commitment Subscale (VEC). Using multi-sample Structural Equation Modeling, we found that the effect of CCCE on VEC was mediated by CDSE. Although we found cultural differences in the overall level of the vocational measures among the Hong Kong, Shanghai, and American students, the mediation model was confirmed in all three groups of students. 相似文献
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心理社会安全氛围(Psychosocial safety climate,简称PSC)指员工对组织是否重视员工工作过程中与心理健康和安全相关的政策、规程和行为实践的共同感知和看法.回顾相关研究,对PSC的理论建构、测量方法、效度验证及PSC在工作要求-资源模型(Job Demand-Resource Model,简称JD-R模型)中的作用机制等进行了系统梳理.在此基础上,总结JD-R模型完善的理论贡献与管理启示,并提出PSC理论与测量工具完善、工作要求与工作资源层次匹配、考虑组织外及个人因素、开展本土化研究等未来研究方向. 相似文献
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婴儿物理因果感知能力的发展 总被引:1,自引:0,他引:1
继Michotte(1963)用两个发生碰撞的小球对成人的物理因果理解进行研究以来,许多研究者使用该碰撞情境对婴儿的物理因果感知进行了一系列的研究,并得出了许多颇有争议的结论。本文结合近几年国外对婴儿物理因果感知能力的相关研究,阐述了婴儿感知简单物理情境中的因果关系能力的发展,评价了用来解释婴儿物理因果感知的模块理论与信息加工理论,以期对婴儿期的物理因果感知有一较全面的了解。 相似文献