Rebecca Keyte, Sophia Kauser, Michail Mantzios, Helen Egan
{"title":"囊性纤维化在CFTR调节剂治疗前后的心理影响和健康风险。","authors":"Rebecca Keyte, Sophia Kauser, Michail Mantzios, Helen Egan","doi":"10.1177/17423953221099042","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>Twenty adult participants (males: 8, age range: 22-51 years, average FEV<sub>1</sub>: 53.45%) were recruited via social media to participate in a semi-structured interview; 17 participants were currently taking Elexacaftor/Tezacaftor/Ivacaftor (Kaftrio).</p><p><strong>Results: </strong>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.</p><p><strong>Discussion: </strong>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.</p>","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":"{\"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\":\"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>Twenty adult participants (males: 8, age range: 22-51 years, average FEV<sub>1</sub>: 53.45%) were recruited via social media to participate in a semi-structured interview; 17 participants were currently taking Elexacaftor/Tezacaftor/Ivacaftor (Kaftrio).</p><p><strong>Results: </strong>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.</p><p><strong>Discussion: </strong>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.</p>\",\"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}","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}
The psychological implications and health risks of cystic fibrosis pre- and post- CFTR modulator therapy.
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.
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.
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