COVID-19大流行期间患者对α -1抗胰蛋白酶缺乏症增强治疗的看法和自我输注障碍的评估

IF 2.3 Q2 RESPIRATORY SYSTEM

Pulmonary Therapy Pub Date : 2022-03-01 Epub Date: 2022-01-24 DOI:10.1007/s41030-022-00182-z

Jacob Colello, Anna Ptasinski, Xiang Zhan, Sundeep Kaur, Timothy Craig

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引用次数: 4

摘要

α -1抗胰蛋白酶(AAT)缺乏症是一种常染色体共显性遗传病，使个体易患肺部和肝脏疾病，严重者可通过静脉输注增强治疗。我们的目的是评估在SARS-CoV-2大流行期间患者不愿过渡到自我给药增强α -1抗胰蛋白酶。方法:对22例正在接受AAT强化治疗的严重α -1抗胰蛋白酶缺乏症患者进行电话问卷调查。纳入标准:18岁，诊断为AATD，接受静脉AAT蛋白增强治疗的患者[公式:见文]。收集了有关人口统计、向自我治疗过渡的观点以及焦虑和抑郁患病率的信息。使用REDCap匿名收集结果。进行联合和边际统计分析，量化参与者向自我输液过渡的意愿与性别、年龄、治疗年数、焦虑和抑郁之间的关系。结果:22例患者中，男性14例，女性8例。年龄36 ~ 79岁，平均62.5岁。基因型为ZZ(14)、MZ(3)和SZ(2)。静脉注射延长的平均时间为9.5年。大多数参与者(16名)知道自我注射是一种选择。8名参与者表示，如果接受过培训和教育，他们愿意考虑改用自我注射。8名患者报告说，对COVID-19传播的恐惧影响了他们的决策。焦虑和抑郁得分分别高于正常水平的有4名和6名。性别、年龄、治疗年限、焦虑或抑郁与考虑自我输液治疗的意愿无关。结论:尽管AATD患者可能受益于AAT自我输注的原因有很多，包括减少对SARS-CoV-2的暴露，但大多数患者更倾向于家庭护士输注治疗。

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Assessment of Patient Perspectives and Barriers to Self-Infusion of Augmentation Therapy for Alpha-1 Antitrypsin Deficiency During the COVID-19 Pandemic.

Introduction: Alpha-1 antitrypsin (AAT) deficiency is an autosomal co-dominant genetic condition that predisposes individuals to pulmonary and hepatic disease, and in severe cases is treated with augmentation by intravenous infusion. Our aim was to assess patient reluctance to transition to self-administered augmentation of alpha-1-antitrypsin, during the pandemic of SARS-CoV-2.

Methods: A phone questionnaire was administered to 22 patients with severe alpha-1-antitrypsin deficiency who were currently receiving AAT augmentation therapy. Inclusion criteria included patients [Formula: see text] 18 years old, diagnosed with AATD, and receiving intravenous AAT protein augmentation therapy. Information was gathered regarding demographics, perspectives on transitioning to self-administered treatment, and anxiety and depression prevalence. Results were collected anonymously using REDCap. Joint and marginal statistical analysis was done to quantify links between participants' willingness to transition to self-infusion and correlations with sex, age, years of therapy, anxiety, and depression.

Results: Of 22 patients, 14 were male and eight were female. Ages ranged from 36 to 79 years, with an average of 62.5. Genotypes were ZZ (14), MZ (3), and SZ (2) among others. Average length of intravenous augmentation was 9.5 years. The majority, 16 participants, were aware self-infusion was an option. Eight participants were willing to consider transitioning to self-infusion if trained and educated. Eight patients reported that fear of COVID-19 transmission influenced their decision-making. Above-normal anxiety, and depression scores, were found in four, and six patients, respectively. Neither sex, age, years of treatment, anxiety, or depression were found to be associated with willingness to consider self-infusion therapy.

Conclusions: Although there are many reasons AATD patients may benefit from AAT self-infusion, including decreased exposure to SARS-CoV-2, the majority preferred home nurse-infused therapy.

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来源期刊

Pulmonary Therapy Medicine-Pulmonary and Respiratory Medicine

CiteScore

5.20

自引率

3.30%

发文量

审稿时长

6 weeks

期刊介绍： Aims and Scope Pulmonary Therapy is an international, open access, peer-reviewed (single-blind), and rapid publication journal. The scope of the journal is broad and will consider all scientifically sound research from pre-clinical, clinical (all phases), observational, real-world, and health outcomes research around the use of pulmonary therapies, devices, and surgical techniques. Areas of focus include, but are not limited to: asthma; chronic obstructive pulmonary disease; idiopathic pulmonary fibrosis; pulmonary hypertension; cystic fibrosis; lung cancer; respiratory tract disorders; allergic rhinitis and other respiratory allergies; influenza, pneumococcal infection, respiratory syncytial virus and other respiratory infections; and inhalers and other device therapies. The journal is of interest to a broad audience of pharmaceutical and healthcare professionals and publishes original research, reviews, case reports/series, trial protocols and short communications such as commentaries and editorials. Pulmonary Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of quality research, which may be considered of insufficient interest by other journals. Rapid Publication The journal’s publication timelines aim for a rapid peer review of 2 weeks. If an article is accepted it will be published 3–4 weeks from acceptance. The rapid timelines are achieved through the combination of a dedicated in-house editorial team, who manage article workflow, and an extensive Editorial and Advisory Board who assist with peer review. This allows the journal to support the rapid dissemination of research, whilst still providing robust peer review. Combined with the journal’s open access model this allows for the rapid, efficient communication of the latest research and reviews, fostering the advancement of pulmonary therapies. Open Access All articles published by Pulmonary Therapy are open access. Personal Service The journal’s dedicated in-house editorial team offer a personal “concierge service” meaning authors will always have an editorial contact able to update them on the status of their manuscript. The editorial team check all manuscripts to ensure that articles conform to the most recent COPE, GPP and ICMJE publishing guidelines. This supports the publication of ethically sound and transparent research. 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