Division of Pediatric Pulmonary.
Department of Pediatrics, Stony Brook Children's Hospital, Renaissance School of Medicine at Stony Brook University.
Curr Opin Pediatr. 2023 Oct 1;35(5):603-610. doi: 10.1097/MOP.0000000000001286. Epub 2023 Aug 18.
This review focuses on sharing the current and changing cystic fibrosis (CF) care model. This includes changes in CF care as a chronic disease with availability of new revolutionary, highly effective therapies as well as incorporation of shared decision-making, coproduction of care, quality improvement, telemedicine, and remote patient monitoring.
Changes in the CF management, the CF patient population, and CF care team are described as well as how CF care has adapted to these changes.
CF is a chronic, multisystem disease requiring a large specialized multidisciplinary care team for effective treatment. With improvements in CF care and new treatments, people with CF are living longer and healthier lives. As new issues arise, the CF team needs to adapt. This was highlighted by the introduction of highly effective cystic fibrosis transmembrane conductance regulator modulator therapy, which targets the cellular defect in CF, the COVID-19 pandemic, which lead to the incorporation of telehealth and remote patient monitoring into the CF care model, and the partnering with people with CF and families through shared decision-making and coproduction.
本文重点介绍囊性纤维化(CF)护理模式的现状和变化。这包括 CF 作为一种慢性病的护理变化,新的变革性、高效疗法的出现,以及共同决策、护理共同生产、质量改进、远程医疗和远程患者监测的纳入。
描述了 CF 管理、CF 患者人群和 CF 护理团队的变化,以及 CF 护理如何适应这些变化。
CF 是一种慢性多系统疾病,需要一个大型的专门多学科护理团队进行有效的治疗。随着 CF 护理的改善和新的治疗方法的出现,CF 患者的寿命更长,生活更健康。随着新问题的出现,CF 团队需要做出调整。这一点在高效的囊性纤维化跨膜电导调节剂治疗方法的引入中得到了强调,该方法针对 CF 的细胞缺陷;在 COVID-19 大流行期间,远程医疗和远程患者监测被纳入 CF 护理模式;并通过共同决策和共同生产与 CF 患者及其家属合作。