Objective:This study’s objective was to understand the experiences and perspectives of people with multiple sclerosis who received infusions of natalizumab at home instead of the tertiary hospital day unit. Background:Continually returning once every four weeks to an out-patient department to complete an intravenous infusion can be taxing for chronic disease patients. In Australia, acute care patients may be offered hospital in the home service. In-home services are delivered by highly qualified, trained nurses following the infusion protocols similar to that of the hospital. However, this service is not yet offered for chronic disease patients, such as those with relapsing remitting multiple sclerosis. Study design and methods:An exploratorydescriptive study that incorporated face-to-face audio-recorded interviews of people with multiple sclerosis was undertaken as part of a larger study that trialled delivery of natalizumab at home instead of the hospital day unit. The interviews were conducted at the Ambulatory Care Day Unit of a hospital following a period of three natalizumab infusions in participants’ homes. Twelve people with multiple sclerosis (two males and 10 females) aged between 18–56 years participated in this study. Results: A main theme of ‘patient-centredness’ that describes the positive contribution of having patients at the centre of care when delivering home infusions emerged. This encompassed three subthemes: ‘in the comfort of their own home’, ‘convenience for patients and their families’ and ‘saving time and money’. Patient-centred care was an important part of the model of care because it provided flexibility for the participants in managing their home and work-life commitments. Discussion:Although home infusion therapy requires a healthcare team approach, this study’s findings demonstrated that delivering patient-centred home infusions provided satisfaction for people with multiple sclerosis. This enabled natalizumab to be delivered at patients’ preferred time in the convenience of their own home. Conclusion:If models of care are to be truly patientcentred, the convenience of the location of the delivery of safe treatment must be a consideration into the future design of services for those with longterm health issues such as multiple sclerosis. What is already known about this topic?– People with multiple sclerosis come to hospital on a four-weekly basis to receive natalizumab infusions via an out-patient department service. Home infusion programs have been established to stem the increasing demand for acute care hospital beds. What this paper adds.– Home natalizumab infusions were accepted by the participants, particularly because of the convenience involved.– The study contributes to patient-centredness of home infusions, which may improve the health and wellbeing of people with multiple sclerosis. https://doi.org/10.37464/2020.371.4

中文翻译：

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患者在家庭环境中那他珠单抗治疗的体验：一项定性研究

目的：本研究的目的是了解多发性硬化症患者在家而非三级医院日间病房接受那他珠单抗输注的经历和观点。背景：连续每 4 周返回门诊部完成静脉输液对慢性病患者来说可能会很费力。在澳大利亚，急诊病人可能会被提供住院服务。居家服务由高素质、训练有素的护士按照与医院类似的输液协议提供。然而，这项服务尚未提供给慢性病患者，例如复发缓解型多发性硬化症患者。研究设计和方法：一项探索性描述性研究纳入了对多发性硬化症患者的面对面录音访谈，作为一项更大的研究的一部分，该研究尝试在家中而不是住院部提供那他珠单抗。访谈是在参与者家中进行了 3 次那他珠单抗输注后，在一家医院的门诊护理日间进行的。12 名年龄在 18-56 岁之间的多发性硬化症患者（两名男性和 10 名女性）参与了这项研究。结果：出现了“以患者为中心”的主题，它描述了在提供家庭输液时让患者处于护理中心的积极贡献。这包括三个子主题：“在自己家中舒适”、“方便患者及其家人”和“节省时间和金钱”。以患者为中心的护理是护理模式的重要组成部分，因为它为参与者管理他们的家庭和工作生活承诺提供了灵活性。讨论：虽然家庭输液治疗需要医疗团队的方法，但本研究的结果表明，提供以患者为中心的家庭输液让多发性硬化症患者感到满意。这使得那他珠单抗能够在患者自己喜欢的时间在家中提供。结论：如果护理模式要真正以患者为中心，那么在未来为患有多发性硬化症等长期健康问题的人设计服务时，必须考虑提供安全治疗地点的便利性。关于该主题的已知信息是什么？ - 多发性硬化症患者每四个星期到医院通过门诊服务接受那他珠单抗输注。已经建立了家庭输液计划，以遏制对急症护理病床日益增长的需求。本文补充内容。– 参与者接受了家庭那他珠单抗输注，特别是因为所涉及的便利。– 该研究有助于以患者为中心进行家庭输注，这可能会改善多发性硬化症患者的健康和福祉。https://doi.org/10.37464/2020.371.4 – 参与者接受了家庭那他珠单抗输注，特别是因为所涉及的便利。– 该研究有助于以患者为中心的家庭输注，这可能会改善多发性硬化症患者的健康和福祉。https://doi.org/10.37464/2020.371.4 – 参与者接受了家庭那他珠单抗输注，特别是因为所涉及的便利。– 该研究有助于以患者为中心的家庭输注，这可能会改善多发性硬化症患者的健康和福祉。https://doi.org/10.37464/2020.371.4