The psychological implications and health risks of cystic fibrosis pre- and post- CFTR modulator therapy.

IF 1.8 4区医学 Q3 HEALTH CARE SCIENCES & SERVICES Chronic Illness Pub Date : 2023-09-01 Epub Date: 2022-05-03 DOI:10.1177/17423953221099042

Rebecca Keyte, Sophia Kauser, Michail Mantzios, Helen Egan

{"title":"The psychological implications and health risks of cystic fibrosis pre- and post- CFTR modulator therapy.","authors":"Rebecca Keyte, Sophia Kauser, Michail Mantzios, Helen Egan","doi":"10.1177/17423953221099042","DOIUrl":null,"url":null,"abstract":"Objectives: Cystic Fibrosis (CF) care is entering a period of personalised medicine with the emergence of CF transmembrane conductance regulator (CFTR) modulator therapies. Anecdotally individuals are reporting life-changing effects of modulator therapies, proposing an important area of study.Methods: Twenty adult participants (males: 8, age range: 22-51 years, average FEV1: 53.45%) were recruited via social media to participate in a semi-structured interview; 17 participants were currently taking Elexacaftor/Tezacaftor/Ivacaftor (Kaftrio).Results: An appreciation of a \"normal life\" post-modulator therapy is paramount, with improvements in symptoms and quality-of-life bringing a more urgent imperative for the provision of effective support to encourage positive health and lifestyle choices.Discussion: In this new era of CF care, there remains many challenges present for the CF community, with participants suggesting that proactive psychological support is required along with proactive awareness regarding health risk behaviours for the current and future CF generations.","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 3","pages":"539-556"},"PeriodicalIF":1.8000,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"10","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Chronic Illness","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/17423953221099042","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2022/5/3 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}

引用次数: 10

Abstract

Objectives: Cystic Fibrosis (CF) care is entering a period of personalised medicine with the emergence of CF transmembrane conductance regulator (CFTR) modulator therapies. Anecdotally individuals are reporting life-changing effects of modulator therapies, proposing an important area of study.

Methods: Twenty adult participants (males: 8, age range: 22-51 years, average FEV₁: 53.45%) were recruited via social media to participate in a semi-structured interview; 17 participants were currently taking Elexacaftor/Tezacaftor/Ivacaftor (Kaftrio).

Results: An appreciation of a "normal life" post-modulator therapy is paramount, with improvements in symptoms and quality-of-life bringing a more urgent imperative for the provision of effective support to encourage positive health and lifestyle choices.

Discussion: In this new era of CF care, there remains many challenges present for the CF community, with participants suggesting that proactive psychological support is required along with proactive awareness regarding health risk behaviours for the current and future CF generations.

查看原文

微信好友朋友圈 QQ好友复制链接

本刊更多论文

囊性纤维化在CFTR调节剂治疗前后的心理影响和健康风险。

目的：随着CF跨膜电导调节因子（CFTR）调节剂疗法的出现，囊性纤维化（CF）护理正进入个性化药物时代。有趣的是，个体报告了调节剂疗法改变生活的效果，提出了一个重要的研究领域。方法：通过社交媒体招募20名成年参与者（男性：8岁，年龄范围：22-51岁，平均FEV1:53.45%）参加半结构化访谈；17名参与者目前正在服用Elexacaftor/Tezacaftor/Ivacaftor（Kaftrio）。结果：对“正常生活”后调节剂治疗的赞赏至关重要，症状和生活质量的改善使提供有效支持以鼓励积极的健康和生活方式选择变得更加迫切。讨论：在这个CF护理的新时代，CF社区仍然面临许多挑战，参与者建议，需要积极主动的心理支持，以及对当前和未来CF世代健康风险行为的积极认识。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文去求助

来源期刊

Chronic Illness Multiple-

CiteScore

3.80

自引率

0.00%

发文量

期刊介绍： Chronic illnesses are prolonged, do not resolve spontaneously, and are rarely completely cured. The most common are cardiovascular diseases (hypertension, coronary artery disease, stroke and heart failure), the arthritides, asthma and chronic obstructive pulmonary disease, diabetes and epilepsy. There is increasing evidence that mental illnesses such as depression are best understood as chronic health problems. HIV/AIDS has become a chronic condition in those countries where effective medication is available.