Womack Caitlin, Farsin Ruhan, Farsad Mahsa, Chaudary Nauman
Division of Pulmonary Disease and Critical Care Medicine, Department of Medicine, Virginia Commonwealth University, Richmond, VA, USA.
Int J Gen Med. 2020 Nov 17;13:1175-1186. doi: 10.2147/IJGM.S274193. eCollection 2020.
Cystic fibrosis (CF) is a genetic disease in which consistent follow-up care is required to avoid a decline in pulmonary and nutritional health. It is believed that if a CF patient ceases treatment for 2 days, this can result in an exacerbation. One week of missed treatments can result in a hospitalization and 1 month of missed treatments can result in an earlier demise. With a global pandemic that has affected more than 9 million people, many CF clinics were required to take steps to avoid transmission of this dangerous virus. This may result in delays in delivery of timely CF care due to closure of clinics and pulmonary function testing (PFT) laboratories and limited staff allowed on site for conducting in-person visits. These measures, along with suggestions from the Cystic Fibrosis Foundation (CFF) to extend the social distancing longer than traditional CDC recommendations for the CF community, create an urgent need to explore novel ways to deliver safer care via new standards in chronic health conditions like CF. Especially, as these preventive strategies may be necessary for long-term maintenance, few objective alternatives exist to guide clinicians and allied health professionals in CF centers how to proceed in this new era. This also presents an opportunity for novel approaches that could improve delivery of CF care with remote monitoring and real-time delivery of care in patients' home environments. Such emerging approaches could benefit patient care, leading to reduced costs and readmissions and improved access to care, medication adherence, and patient communication. We summarize our own experience and discuss the emerging delivery of CF care which can be generalizable to other pulmonary illnesses.
囊性纤维化(CF)是一种遗传性疾病,需要持续的后续护理以避免肺部和营养健康状况下降。据信,如果CF患者停止治疗2天,可能会导致病情加重。错过一周的治疗可能会导致住院,错过一个月的治疗可能会导致过早死亡。在一场已影响超过900万人的全球大流行中,许多CF诊所需要采取措施避免这种危险病毒的传播。由于诊所和肺功能测试(PFT)实验室关闭,以及现场进行面对面就诊的工作人员有限,这可能会导致及时的CF护理延迟。这些措施,再加上囊性纤维化基金会(CFF)提出的将社交距离延长至超过美国疾病控制与预防中心(CDC)对CF群体的传统建议的建议,迫切需要探索通过CF等慢性健康状况的新标准提供更安全护理的新方法。特别是,由于这些预防策略可能是长期维持所必需的,几乎没有客观的替代方案来指导CF中心的临床医生和相关健康专业人员在这个新时代如何开展工作。这也为新方法提供了机会,这些新方法可以通过远程监测和在患者家中实时提供护理来改善CF护理的提供。这种新兴方法可能有益于患者护理,从而降低成本和再入院率,并改善护理可及性、药物依从性和患者沟通。我们总结了自己的经验,并讨论了CF护理的新兴提供方式,这些方式可推广到其他肺部疾病。