成年囊性纤维化患者的真实世界依从性较低：CFHealthHub数字学习健康系统的回顾性分析 - Suppr

Real-World Adherence Among Adults With Cystic Fibrosis Is Low: A Retrospective Analysis of the CFHealthHub Digital Learning Health System.

作者信息

Hoo Zhe Hui, Totton Nikki, Waterhouse Simon, Lewis Jen, Girling Carla, Bradburn Michael, Arden Madelynne A, Whelan Pauline, Ainsworth John, Dawson Sophie, Millward Sarah, Barnett Kate, Dewar Jane, Barr Helen L, Saini Gauri, Shepherd Elizabeth, Carroll Mary, Allenby Mark I, Daniels Thomas V, Nightingale Julia A, Lowther Michelle, Carolan Charlotte, Clarke Charlotte, Szczepanski Rachel, Hutchings Marlene, Edenborough Frank P, Curley Rachael, Wildman Martin J

机构信息

School of Health and Related Research, University of Sheffield, Sheffield, UK; Sheffield Adult Cystic Fibrosis Centre, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

School of Health and Related Research, University of Sheffield, Sheffield, UK.

出版信息

Chest. 2021 Dec;160(6):2061-2065. doi: 10.1016/j.chest.2021.06.039. Epub 2021 Jun 26.

DOI:10.1016/j.chest.2021.06.039

PMID:34186037

Abstract

摘要

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Real-World Adherence Among Adults With Cystic Fibrosis Is Low: A Retrospective Analysis of the CFHealthHub Digital Learning Health System.成年囊性纤维化患者的真实世界依从性较低：CFHealthHub数字学习健康系统的回顾性分析

Chest. 2021 Dec;160(6):2061-2065. doi: 10.1016/j.chest.2021.06.039. Epub 2021 Jun 26.

Development of data processing algorithm to calculate adherence for adults with cystic fibrosis using inhaled therapy - a multi-center observational study within the CFHealthHub learning health system.开发用于计算使用吸入疗法的成人囊性纤维化患者依从性的数据处理算法 - 在 CFHealthHub 学习健康系统内的一项多中心观察性研究。

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Mechanisms of Action of a Web-Based Intervention With Health Professional Support to Increase Adherence to Nebulizer Treatments in Adults With Cystic Fibrosis: Qualitative Interview Study.基于网络的干预措施与卫生专业人员支持增加成人囊性纤维化患者使用雾化器治疗的依从性的作用机制：定性访谈研究。

J Med Internet Res. 2020 Oct 6;22(10):e16782. doi: 10.2196/16782.

Using a learning health system to understand the mismatch between medicines supply and actual medicines use among adults with cystic fibrosis.利用学习型卫生系统了解囊性纤维化成年患者的药物供应与实际使用之间的不匹配情况。

J Cyst Fibros. 2022 Mar;21(2):323-331. doi: 10.1016/j.jcf.2021.09.007. Epub 2021 Sep 23.

Nebuliser systems for drug delivery in cystic fibrosis.用于囊性纤维化药物递送的雾化器系统。

Paediatr Respir Rev. 2013 Jun;14(2):98-9. doi: 10.1016/j.prrv.2013.03.004. Epub 2013 Apr 10.

When Is Forgetting Not Forgetting? A Discursive Analysis of Differences in Forgetting Talk Between Adults With Cystic Fibrosis With Different Levels of Adherence to Nebulizer Treatments.遗忘还是不忘？对不同遵医嘱程度囊性纤维化成人之间在遗忘话题上的差异的话语分析。

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Understanding patient activation and adherence to nebuliser treatment in adults with cystic fibrosis: responses to the UK version of PAM-13 and a think aloud study.理解成人囊性纤维化患者对雾化器治疗的积极性和依从性：对英国版 PAM-13 的反应和出声思维研究。

BMC Health Serv Res. 2019 Jun 24;19(1):420. doi: 10.1186/s12913-019-4260-5.

Adherence to nebulised antibiotics in cystic fibrosis.囊性纤维化患者对雾化抗生素的依从性。

Patient Educ Couns. 2009 Apr;75(1):141-4. doi: 10.1016/j.pec.2008.08.027. Epub 2008 Oct 25.

Enhancing adherence to inhaled therapies in cystic fibrosis.提高囊性纤维化患者对吸入疗法的依从性。

Ther Adv Respir Dis. 2014 Apr;8(2):39-47. doi: 10.1177/1753465814524471. Epub 2014 Mar 4.

Factors affecting nebulised medicine adherence in adult patients with cystic fibrosis: a qualitative study.影响成年囊性纤维化患者雾化药物依从性的因素：一项定性研究。

Int J Clin Pharm. 2015 Feb;37(1):86-93. doi: 10.1007/s11096-014-0043-6. Epub 2014 Nov 29.

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Medication adherence to CFTR modulators in patients with cystic fibrosis: a systematic review.囊性纤维化患者中 CFTR 调节剂的药物依从性：系统评价。

Eur Respir Rev. 2024 Aug 14;33(173). doi: 10.1183/16000617.0060-2024. Print 2024 Jul.

Nebuliser systems for drug delivery in cystic fibrosis.雾化器系统在囊性纤维化中的药物输送。

Cochrane Database Syst Rev. 2023 Nov 9;11(11):CD007639. doi: 10.1002/14651858.CD007639.pub3.

Digital technology for early identification of exacerbations in people with cystic fibrosis.数字技术用于早期识别囊性纤维化患者的恶化情况。

Cochrane Database Syst Rev. 2023 Apr 14;4(4):CD014606. doi: 10.1002/14651858.CD014606.pub2.

Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis.心理干预对改善囊性纤维化患者吸入治疗依从性的作用。

Cochrane Database Syst Rev. 2023 Mar 29;3(3):CD013766. doi: 10.1002/14651858.CD013766.pub2.

The CFHealthHub Learning Health System: Using Real-Time Adherence Data to Support a Community of Practice to Deliver Continuous Improvement in an Archetypal Long-Term Condition.囊性纤维化健康中心学习型健康系统：利用实时依从性数据支持实践社区，以在典型的长期病症中实现持续改进。

Healthcare (Basel). 2022 Dec 21;11(1):20. doi: 10.3390/healthcare11010020.

Impact of the COVID-19 pandemic and associated lockdown measures on the management, health, and behavior of the cystic fibrosis population in France during 2020 (MUCONFIN).2020 年 COVID-19 大流行及相关封锁措施对法国囊性纤维化人群的管理、健康和行为的影响（MUCONFIN）。

Front Public Health. 2022 Nov 14;10:978627. doi: 10.3389/fpubh.2022.978627. eCollection 2022.

Modelling Successful Self-Management in Adults With Cystic Fibrosis: Vicarious Self-Efficacy From Videos of 'People Like Me'.对成年囊性纤维化患者成功自我管理的建模：来自“像我这样的人”视频的替代性自我效能感

Cureus. 2022 Jul 2;14(7):e26511. doi: 10.7759/cureus.26511. eCollection 2022 Jul.

Self-management intervention to reduce pulmonary exacerbations by supporting treatment adherence in adults with cystic fibrosis: a randomised controlled trial.自我管理干预通过支持治疗依从性来减少成人囊性纤维化患者的肺部恶化：一项随机对照试验。

Thorax. 2022 May;77(5):461-469. doi: 10.1136/thoraxjnl-2021-217594. Epub 2021 Sep 23.

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Real-World Adherence Among Adults With Cystic Fibrosis Is Low: A Retrospective Analysis of the CFHealthHub Digital Learning Health System.

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