Chérin Patrick, Pindi Sala Taylor, Clerson Pierre, Dokhan Annaïk, Fardini Yann, Duracinsky Martin, Crave Jean-Charles, Chassany Olivier
Department of Internal Medicine and Clinical Immunology, La Pitié Salpétrière Hospital.
University Paris-Diderot, Patient-Centered Outcomes Research, Paris.
Medicine (Baltimore). 2020 Feb;99(7):e19012. doi: 10.1097/MD.0000000000019012.
Immunoglobulins are 2nd or 3rd-line treatments in dermatomyositis (DM) or polymyositis (PM) refractory to high-dose corticosteroids and immunosuppressants. Immunoglobulins (2 g/kg/mo) are usually administered intravenously (IVIg) once a month and the patients stay at hospital for a few days. Recently, subcutaneous injections (SCIg) were proposed 2 to 3 times per week, in some dysimmune diseases. SCIg are administered at home preferably by the patient or by a nurse. We investigated the needs and attitudes of DM and PM patients with experience of IVIg and SCIg.Seven patients (6 PM and 1 DM) from a single center participated in a focus group (N = 6) or underwent in-depth interview (N = 1). Six had the experience of both IVIg at hospital and SCIg at home; 1 has received only IVIg at hospital. Verbatim was recorded and transcribed for further content analysis and computer-aided textual analysis.Clinical profiles and stories were heterogeneous. At diagnosis, muscle weakness, severe pain, and fatigue were at the forefront of patients' complaints impairing daily life. Patients reported considerable improvement with immunoglobulins. SCIg were described as easy, less disruptive for daily life, well tolerated, and less time-consuming. SCIg self-administration at home restored the feeling of autonomy and control.Interviews of DM and PM patients revealed that recovering autonomy and control was a central advantage of home-based SCIg that were efficient, well tolerated, and perceived as a good compromise between treatment burden and efficacy.
免疫球蛋白是治疗对大剂量皮质类固醇和免疫抑制剂难治的皮肌炎（DM）或多发性肌炎（PM）的二线或三线治疗药物。免疫球蛋白（2g/kg/月）通常每月静脉注射一次（IVIg），患者需住院几天。最近，在一些免疫失调疾病中，有人提出每周进行2至3次皮下注射（SCIg）。SCIg最好由患者或护士在家中进行注射。我们调查了有IVIg和SCIg使用经验的DM和PM患者的需求和态度。来自单一中心的7名患者（6例PM和1例DM）参加了焦点小组（N = 6）或接受了深入访谈（N = 1）。其中6人有在医院接受IVIg和在家接受SCIg的经验；1人仅在医院接受过IVIg治疗。逐字记录并转录以供进一步的内容分析和计算机辅助文本分析。临床特征和经历各不相同。在诊断时，肌肉无力、剧痛和疲劳是患者日常生活中最主要的抱怨。患者报告使用免疫球蛋白后有显著改善。SCIg被描述为操作简便、对日常生活干扰较小、耐受性良好且耗时较少。在家中自行注射SCIg恢复了自主感和掌控感。对DM和PM患者的访谈显示，恢复自主感和掌控感是居家SCIg的核心优势，SCIg高效、耐受性良好，并且被视为治疗负担和疗效之间的良好折衷方案。
