González Carlos M, Carmona Loreto, de Toro Javier, Batlle-Gualda Enrique, Torralba Antonio I, Arteaga María J, Cea-Calvo Luis
Department of Rheumatology, Gregorio Marañón Hospital.
Instituto de Salud Musculoesquelética, Madrid.
Patient Prefer Adherence. 2017 Jul 19;11:1243-1252. doi: 10.2147/PPA.S137052. eCollection 2017.
The aim of this study was to explore perceptions of patients with rheumatic diseases treated with subcutaneous (SC) biological drugs on the impact on daily life and satisfaction with current therapy, including preferred attributes.
A survey was developed ad hoc by four rheumatologists and three patients, including Likert questions on the impact of disease and treatment on daily life and preferred attributes of treatment. Rheumatologists from 50 participating centers were instructed to handout the survey to 20 consecutive patients with rheumatoid arthritis (RA), axial spondyloarthritis (ax-SpA), or psoriatic arthritis (PsA) receiving SC biological drugs. Patients responded to the survey at home and sent it to a central facility by prepaid mail.
A total of 592 patients returned the survey (response rate: 59.2%), 51.4% of whom had RA, 23.8% had ax-SpA, and 19.6% had PsA. Patients reported moderate-to-severe impact of their disease on their quality of life (QoL) (51.9%), work/daily activities (49.2%), emotional well-being (41.0%), personal relationships (26.0%), and close relatives' life (32.3%); 30%-50% patients reported seldom/never being inquired about these aspects by their rheumatologists. Treatment attributes ranked as most important were the normalization of QoL (43.6%) and the relief from symptoms (35.2%). The satisfaction with their current antirheumatic therapy was high (>80% were "satisfied" or "very satisfied"), despite moderate/severe impact of disease.
Patients with rheumatic diseases on SC biological therapy perceive a high disease impact on different aspects of daily life, despite being highly satisfied with their treatment; the perception is that physicians do not frequently address personal problems. Normalization of QoL is the most important attribute of therapies to patients.
本研究旨在探讨接受皮下注射(SC)生物制剂治疗的风湿性疾病患者对日常生活影响及当前治疗满意度的看法,包括偏好的属性。
由四位风湿病学家和三位患者临时设计了一项调查,包括关于疾病和治疗对日常生活影响以及治疗偏好属性的李克特量表问题。来自50个参与中心的风湿病学家被指示将调查问卷分发给连续20例接受SC生物制剂治疗的类风湿关节炎(RA)、中轴型脊柱关节炎(ax-SpA)或银屑病关节炎(PsA)患者。患者在家中填写调查问卷,并通过预付邮资的方式寄回中央机构。
共有592例患者返回了调查问卷(回复率:59.2%),其中51.4%为RA患者,23.8%为ax-SpA患者,19.6%为PsA患者。患者报告其疾病对生活质量(QoL)(51.9%)、工作/日常活动(49.2%)、情绪健康(41.0%)、人际关系(26.0%)和近亲生活(32.3%)有中度至重度影响;30%-50%的患者报告风湿病学家很少/从未询问过这些方面。排名最重要的治疗属性是QoL正常化(43.6%)和症状缓解(35.2%)。尽管疾病有中度/重度影响,但患者对当前抗风湿治疗的满意度较高(>80%为“满意”或“非常满意”)。
接受SC生物治疗的风湿性疾病患者尽管对治疗高度满意,但仍认为疾病对日常生活的不同方面有很大影响;患者认为医生不常解决个人问题。QoL正常化是患者认为治疗最重要的属性。