新的治疗方案预计将使囊性纤维化患者的寿命增加几十年，但患有这种遗传性疾病的患者仍必须处理繁重的问题，如疼痛、疲劳和许多其他令人痛苦的症状。 现在，新的五年，3美元。 国家卫生研究所的国家心肺血液研究所提供的100万美元赠款将帮助记忆研究人员进行一项结合生物学、社会学和临床研究方法的新研究，以更好地了解这些症状的潜在过程，并确定提高生活质量的机会。 根据囊性纤维化基金会的数据，在美国有近40000名成人和儿童患有慢性疲劳综合征，它主要影响肺部、消化系统和其他器官。 新疗法已将中位预期寿命从1990年的30岁提高到今天的59岁。 埃默里姑息治疗中心研究主任、该研究的首席研究员、博士dio kavalieratos认为，这一前景的变化是一个重新思考诊所如何帮助慢性疲劳患者日常生活的机会。 “同时观察慢性疲劳对人的新陈代谢、身体、精神和日常生活的影响，将为我们预防和治疗症状提供新的目标。 据我们所知，这是最早将复杂的代谢组学分析与定性研究方法相结合的研究之一&将分子水平上发生的事情与一个人管理和适应繁重症状的生活经验进行比较。 这项开创性的研究计划题为“以患者为中心了解囊性纤维化的生活质量、症状和健康公平”，将由卡瓦利拉托斯与来自埃默里大学、奥古斯塔大学、北卡罗来纳大学教堂山分校、乔治亚州囊性纤维化研究和翻译中心以及患者利益相关者的合作伙伴共同领导。 研究小组将对三种不同类型的数据进行三角分析，以进一步了解症状与生活质量之间的关系。 这包括：慢性疲劳患者关于他们经常经历的症状的报告血液和呼吸样本中有炎症或其他生物过程的证据与参与者交流他们的医疗保健和其他可能影响他们健康的日常生活因素研究小组将寻找症状的模式或集群，例如咳嗽患者是否也倾向于疲劳和疼痛。 他们将比较有共同症状的人的特征，并使用先进的机器学习技术来研究一组症状是否与炎症等生物过程同时发生。 最后，该小组将采访所有参与者，了解他们获得cf护理的经历，以确定改善症状管理和个性化治疗cf患者的机会。 这项研究的目标是在未来几年招募140名患有慢性疲劳症的成年人。 参与这项研究的患者调查员cade hovater说，患有慢性疲劳的人通常认为他们别无选择，只能忍受疼痛和其他症状。 “通常，作为慢性疲劳综合征患者，我们被告知疼痛、疲劳和其他生活质量问题只是囊性纤维化患者的一部分。 然而，在过去的十年里，我们看到对慢性疲劳心理健康的研究导致了慢性疲劳诊所如何解决心理健康需求的变化。 我希望脉冲cf将提供证据来改善对疼痛、疲劳和其他症状的护理，这些症状往往治疗不足或未经治疗。 ”。
new treatment options are expected to add decades to the lives of people with cystic fibrosis (cf), but those living with this genetic disease still must deal with burdensome issues like pain, fatigue and many other distressing symptoms.now, a new five-year, $3.1 million grant from the national heart, lung, and blood institute (nhlbi) of the national institutes of health (nih) will help emory researchers undertake a novel study combining biological, social, and clinical research methods to better understand the underlying processes of these symptoms – and identify opportunities to improve quality of life.according to the cystic fibrosis foundation, close to 40,000 adults and children in the united states live with cf, which primarily affects the lungs, digestive system, and other organs. new therapies have increased median life expectancy from 30 years in 1990 to 59 years today. dio kavalieratos, phd, director of research for the emory palliative care center and the study’s principal investigator, sees this change in outlook as an opportunity to rethink how clinics help people with cf live day-to-day"our goal is to develop a nuanced, person-centered understanding of cystic fibrosis symptoms," kavalieratos says. "looking side by side at how cf affects someone metabolically, physically, mentally, and in daily life will give us new targets to prevent and treat symptoms. to our knowledge, this is one of the first studies to integrate sophisticated metabolomic analyses with qualitative research methods – to compare what is happening at the molecular level with a person’s lived experience managing and adjusting to burdensome symptoms.”this groundbreaking research initiative, titled "patient-centered understanding of quality of life, symptoms, and health equity in cystic fibrosis (pulse – cf)," will be led by kavalieratos in collaboration with partners from emory university, augusta university, the university of north carolina at chapel hill, the georgia cystic fibrosis research and translation center, and patient stakeholders. the research team will triangulate three different types of data to learn more about the relationship between symptoms and quality of life. this includes:reports by people with cf about the symptoms they experience regularlyevidence of inflammation or other biological processes in blood and breath samplesinterviews with participants about their health care and other factors of daily life that might affect their healththe research team will look for patterns or clusters of symptoms, such as whether people with cough also tend to have fatigue and pain. they will compare characteristics of people who share common symptoms and use advanced machine learning techniques to investigate whether groups of symptoms co-occur with biological processes like inflammation. finally, the group will interview all participants about their experience getting care for cf to identify opportunities to improve symptom management and individualize treatment for people with cf.the study aims to enroll 140 adults living with cf over the next several years. cade hovater, a patient investigator who helped plan the study, says people with cf often believe they have no better option but to endure pain and other symptoms.“often, as people living with cf, we have been told that pain, fatigue, and other quality of life issues are just part of living with cystic fibrosis. however, over the past decade we saw research into cf mental health lead to changes in how mental health needs are addressed in cf clinics. i am hopeful that pulse-cf will provide evidence to improve care for the pain, fatigue, and other symptoms that often go undertreated or untreated.”.
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