Cozon Grégoire Jacques Noël, Clerson Pierre, Dokhan Annaïk, Fardini Yann, Sala Taylor Pindi, Crave Jean-Charles
Department of Clinical Immunology and Rheumatology, Edouard Herriot Hospital, Lyon, France.
Soladis Clinical Studies, Roubaix, France.
Patient Prefer Adherence. 2018 Mar 26;12:423-429. doi: 10.2147/PPA.S156983. eCollection 2018.
Patients with primary immunodeficiency (PID) often receive immunoglobulin replacement therapy (IgRT). Physicians and patients have the choice between various methods of administration. For subcutaneous immunoglobulin infusions, patients may use an automated pump (P) or push the plunger of a syringe (rapid push [RP]). P infusions are performed once a week and last around 1 hour. RP decreases the duration of administration, but requires more frequent infusions.
Eight out of 30 patients (coming from a single center) who had participated in the cross-over, randomized, open-label trial comparing P and RP participated in a focus group or underwent in-depth interviews. Patients had a long history of home-based subcutaneous immunoglobulin using P. The trial suggested that RP had slightly greater interference on daily life than P, but similar efficacy and better cost-effectiveness. When asked about the delivery method they had preferred, around one-third of patients pointed out RP rather than P. In-depth interviews may reveal unforeseen reasons for patients' preferences.
Interviews underlined the complexity of the relationship that the patients maintain with their disease and IgRT. Even if they recognized the genetic nature of the disease and claimed PID was a part of them, patients tried not to be overwhelmed by the disease. IgRT by P was well integrated in patients' routine. By contrast, RP too frequently reminded the patients of their disease. In addition, some patients pointed out the difficulty of pushing the plunger due to the viscosity of the product. Coming back too frequently, RP was not perceived as time saving over a week. Long-lasting use of P could partly explain patients' reasonable reluctance to change to RP.
In-depth interviews of PID patients highlighted unforeseen reasons for patients' preference that the physician needs to explore during the shared medical decision-making process.
原发性免疫缺陷（PID）患者常接受免疫球蛋白替代疗法（IgRT）。医生和患者可在多种给药方法中进行选择。对于皮下注射免疫球蛋白，患者可以使用自动泵（P）或推注注射器的活塞（快速推注[RP]）。使用P进行输注每周一次，持续约1小时。RP可缩短给药时间，但需要更频繁的输注。
参与比较P和RP的交叉、随机、开放标签试验的30名患者（来自单一中心）中有8名参加了焦点小组或接受了深入访谈。患者有长期在家使用P进行皮下免疫球蛋白治疗的病史。试验表明，RP对日常生活的干扰略大于P，但疗效相似且成本效益更好。当被问及他们更喜欢的给药方式时，约三分之一的患者指出是RP而非P。深入访谈可能会揭示患者偏好的意外原因。
访谈强调了患者与疾病及IgRT之间关系的复杂性。即使他们认识到疾病的遗传本质并声称PID是他们自身的一部分，患者仍试图不被疾病所困扰。使用P进行IgRT已很好地融入患者的日常生活。相比之下，RP过于频繁地让患者想起自己的疾病。此外，一些患者指出由于产品的粘性，推注活塞很困难。RP过于频繁地回来，在一周内并未被视为节省时间。长期使用P可以部分解释患者合理地不愿改用RP。
对PID患者的深入访谈突出了患者偏好的意外原因，医生在共同的医疗决策过程中需要对此进行探究。
