Community engagement with genetics: public perceptions and expectations about genetics research

Background

Knowledge of molecular biology and genomics continues to expand rapidly, promising numerous opportunities for improving health. However, a key aspect of the success of genomic medicine is related to public understanding and acceptance.

Design

Using community consultations and an online survey, we explored public attitudes and expectations about genomics research.

Results

Thirty‐three members of the general public in Newfoundland, Canada, took part in the community sessions, while 1024 Atlantic Canadians completed the online survey. Overall, many participants noted they lacked knowledge about genetics and associated research and took the opportunity to ask numerous questions throughout sessions. Participants were largely hopeful about genomics research in its capacity to improve health, not only for current residents, but also for future generations. However, they did not accept such research uncritically, and a variety of complex issues and questions arose during the community consultations and were reflected in survey responses.

Discussion

With the proliferation of biobanks and the rapid pace of discoveries in genomics research, public support will be crucial to realize health improvements. If researchers can engage the public in regular, transparent dialogue, this two‐way communication could allow greater understanding of the research process and the design of efficient and effective genetic health services, informed by the public that will use them.     

综合应用Delphi法、风险矩阵法与Borda序值法评估医院病区药品管理风险

目的:探讨病区药品管理风险评估方法,为科学制定病区药品风险应对策略提供依据。方法:以中日友好医院病区药品管理风险为研究对象,采用Delphi法对病区药品管理风险发生的可能性及后果的严重性进行风险分析;应用风险矩阵法评价病区药品管理风险的风险水平;采用Borda序值法对5类风险进行了排序。结果:2轮调研的专家积极系数均为100%,权威系数为(0.86±0.06),第2轮专家咨询结果显示,受访专家对5项风险的风险发生可能性和后果严重性评价的Kendall协调系数Wc分别为0.428(χ2=25.669,P<0.005),0.426(χ2=25.553,P<0.005),Wc值统计学意义显著。确定了5类病区药品管理风险发生的可能性和后果严重性,并确定了5类风险事件的风险水平及其排序,其中"病区药品管理人员专业素质"的风险排序位列第一。结论:综合应用Delphi法、风险矩阵法与Borda序值法是评估医院药品风险的有效方法,具有推广应用价值。     

248例药物咨询服务的分析和体会

目的：分析我院药物咨询情况,以改善药学咨询服务质量,促进合理用药。方法：收集整理我院2013年上半年共248例药物咨询记录,对咨询药物、咨询内容及人群进行分析。结果：咨询内容以药物的用法用量居多（29.03％）,其次是特殊人群用药（13.71％）,所咨询药物中抗感染药物占主要部分（25.40％）。结论：开展专业化的药物咨询是临床药学工作的重要内容,有助于加强沟通,提高患者用药依从性,促进合理安全用药。     

Presentation and pattern of symptoms in 382 patients with Glanzmann thrombasthenia in Iran

Glanzmann thrombasthenia (GT) is a rare autosomal recessive disease characterized by prolonged bleeding time with normal platelet count and morphology. It is caused by the quantitative or qualitative deficiency of the platelet glycoprotein IIb-IIIa. In 382 Iranian patients with GT diagnosed at a single center during the period 1969-2001, consanguinity between parents was 86.6%, in accord with the high frequency of intrafamilial marriages in Iran. Almost all patients had had abnormal mucocutaneous bleeding (epistaxis and gum bleeding); at follow-up, 4/5 of the patients had been transfused at least once to control hemorrhagic episodes. As expected, almost all the patients had a normal platelet count while the leukocyte count was increased in 19.3%. Among women, an unexpected low rate of pregnancies was observed.     

Sources of Palliative Care Knowledge Among Patients With Advanced or Metastatic Gynecologic Cancer

ContextA minority of patients with advanced or metastatic gynecologic cancer utilize palliative care and lack of knowledge may be a barrier to receiving palliative care services.ObjectivesTo identify sources used by patients with advanced or metastatic gynecologic cancer to learn about palliative care and evaluate for differences in knowledge about palliative care and palliative care utilization by knowledge source.MethodsPatients with gynecologic cancer receiving treatment for advanced or metastatic gynecologic cancer at a single academic medical center were surveyed about their awareness of and knowledge about palliative care. Medical chart review was conducted.ResultsOf the 111 women surveyed, 70 had heard of palliative care (63%). Sixty-eight specified from where they learned of palliative care: cancer care (n = 28; 41.2%), word of mouth (n = 26; 38.2%), work (n = 6; 8.8%), self-education (n = 4; 5.9%), personal experience (n = 2; 2.9%), or do not know (n = 2; 2.9%). Knowledge about palliative care (P = 0.35) and palliative care utilization (P = 0.81) did not differ by awareness of palliative care.ConclusionMost women receiving treatment for advanced gynecologic cancer have heard of palliative care from sources other than their cancer care providers. Knowledge about palliative care and source of knowledge about palliative care were not associated with palliative care utilization. Awareness of palliative care and palliative care utilization may be improved by increasing the low rate of health provider-based education and engaging cancer patients' social networks.     

老年期抑郁症核心症状群的特尔菲法研究

目的:探讨在我国文化背景下老年期抑郁症的临床核心症状群,在此基础上制定症状清单.方法:采用文献法初步筛选出老年期抑郁症核心症状,并对各症状给予描述性定义.在此基础上采用专家咨询法(Delpbi法),按专家纳入标准严格选择咨询专家,最终选择中国大陆及香港、台湾地区30名老年精神科临床专家与老年心理学专家.进行两轮专家咨询,筛选出专家认可的老年期抑郁症核心症状群及其描述性定义.结果:筛选了12个有关老年期抑郁症核心症状条目,按症状重要程度的算数均数大小排列依次为(数值越大,表示专家认为该症状条目越重要)郁闷(9.57)、兴趣减退(9.43)、轻生观念或行为(9.36)、自责(9.00)、缺乏愉快体验(8.79)、无助绝望(8.57)、焦虑不安(8.29)、睡眠紊乱(8.21)、疲乏感(8.21)、躯体不适(8.07)、食欲或体重改变(8.00)、懒散迟缓(7.86).结论:专家咨询法筛选出郁闷、兴趣减退、轻生观念或行为等12个条目为老年期抑郁症临床核心症状群,并确定各症状条目的描述性定义.     

Oral and maxillofacial surgery patient satisfaction with telephone consultations during the COVID-19 pandemic

Due to the COVID-19 pandemic most oral and maxillofacial surgical (OMFS) units have moved to conducting patient consultations over the telephone. The aim of this study was to assess patients' satisfaction with telephone consultations during the COVID-19 pandemic. A retrospective survey was conducted of OMFS patients at our hospital who had telephone consultations between 1 April - 8 June 2020. The survey was conducted by independent interviewers and used the Generic Medical Interview Satisfaction Scale (G-MISS) along with a previously published additional questionnaire. Variables recorded included age, gender, theme of consultation, grade of clinician, and type of consultation. Statistical analysis was performed to assess for any differences between patient groups. The records of 150 consecutive patients were reviewed and 135 met inclusion criteria. A total of 109 patients completed the survey giving a response rate of 80.74%. The total G-MISS score for satisfaction was high, which indicates a high level of satisfaction among all patients. We found no statistical difference in satisfaction when comparing patients in terms of gender, age, theme of consultation, or level of clinician. A significant difference was found in compliance levels between review and new patients, with review patients demonstrating higher compliance levels (p=0.004). Overall, 83.48% of patients said they would be willing to have a telephone consultation in future. The majority of patients in this study reported high levels of satisfaction with telephone consultations. New patients reported lower levels of compliance which may suggest this type of consultation is less suited to telephone consultation.     

Consulting the community: public expectations and attitudes about genetics research

Genomic discoveries and technologies promise numerous opportunities for improving health. Key to these potential health improvements, however, are health-care consumers'' understanding and acceptance of these new developments. We identified community groups and invited them to a public information-consultation session in order to explore public awareness, perception and expectations about genetics and genomics research. One hundred and four members of seven community groups in Newfoundland, Canada took part in the community sessions. Content analysis of participant comments revealed they were largely hopeful about genetics research in its capacity to improve health; however, they did not accept such research uncritically. Complex issues arose during the community consultations, including the place of genetics in primary care, the value of genetics for personal health, and concerns about access to and uses of genetic information. Participants unequivocally endorsed the value of public engagement with these issues. The rapid pace of discoveries in genomics research offers exciting opportunities to improve population health. However, public support will be crucial to realize health improvements. Our findings suggest that regular, transparent dialog between researchers and the public could allow a greater understanding of the research process, as well as assist in the design of efficient and effective genetic health services, informed by the public that will use them.     

口腔正畸病人复诊现状分析及影响因素研究

目的:探讨口腔正畸病人复诊现状及影响因素。方法:采取整群便利抽样法选取2018年1月—2019年12月医院收治的202例口腔正畸病人为研究对象,采用自行设计调查问卷对入选对象一般资料和复诊率进行收集,并对影响口腔正畸病人复诊因素进行单因素分析和多因素Logistic回归分析。结果:在202例口腔正畸病人中定期复诊的有114例(56.44%),未定期复诊的有88例(43.56%);单因素分析显示,性别、年龄、职业、文化程度、有无并发症、复诊次数、复诊时间、付费方式及心理状况均为口腔正畸病人复诊的相关影响因素(P<0.05);多因素分析显示,性别、有无并发症及心理状况均为影响口腔正畸病人复诊的独立影响因素(P<0.05)。结论:女性、合并有并发症及负性心理均为影响口腔正畸病人复诊的独立影响因素,临床应加强对病人心理疏导和全程健康指导,提供便捷的复诊和健康咨询渠道,全面提升口腔正畸病人的身心健康,确保临床疗效的质量。     

我院药学门诊妊娠期用药咨询分析

目的分析医院药学门诊妊娠期用药咨询的基本情况。方法对医院2018年4月至2019年7月的药学门诊妊娠期用药咨询记录进行回顾性统计与分析。结果共提供妊娠期用药咨询525例,孕早期的用药咨询比例最高;咨询量最多的药物类别为中药/中成药(32.85%),其次为抗感染药物(20.33%)。结论中药中成药用药咨询是妊娠期用药咨询的重要内容,是提高药学服务水平、促进妊娠期中药/中成药合理应用的重要环节。