Jamilloux Y, Sarabi M, Kérever S, Boussely N, le Sidaner A, Valgueblasse V, Carrier P, Loustaud-Ratti V, Sautereau D, Fauchais A L, François B, Vidal E
Department of Internal Medicine, Hôpital de la Croix-Rousse, University Claude Bernard, Lyon, France Department of Internal Medicine, University Hospital Dupuytren, University of Limoges, Limoges, France
Department of Hepatogastroenterology, University Hospital Dupuytren, University of Limoges, Limoges, France Department of Medical Oncology, Centre Léon Bérard, Lyon, France.
Lupus. 2015 Nov;24(13):1429-36. doi: 10.1177/0961203315585814. Epub 2015 May 11.
The objective of this report is to investigate the feasibility of collecting patient-reported outcomes (PROs) via e-questionnaires delivered to patients with chronic inflammatory diseases (CIDs).
Consecutive outpatients with a confirmed diagnosis of systemic lupus erythematosus, primary Sjögren's syndrome or inflammatory bowel disease were followed at two medical departments. Patients received monthly e-mails containing the SF36, Hospital Anxiety and Depression scale and an analogue symptom scale over a six-month period. Participation rate, socio-demographic characteristics and patients' satisfaction were analysed.
A total of 128 patients were included (79% female; mean age: 42 ± 12 years). Eighty-two per cent of questionnaires were returned. The monthly participation rate ranged from 89% to 77%, with a six-month attrition rate of 13%. The mean completion rate of questionnaires was 98%. Factors significantly associated with increased answer rate were: married/couple status, greater number of children at home and previous participation in online surveys. The main reasons for non-response were: 'too busy to participate' (35%) and 'away from home Internet access' (31%). Overall, 68% of the participants found the study convenient and 96% agreed to continue at a monthly or bimonthly frequency.
Online home self-assessment of PROs was feasible in the setting of CIDs. Patients were satisfied and willing to continue the survey. The Internet allows immediate and sophisticated presentation of PROs to clinicians. Future studies are warranted to determine how PRO monitoring may contribute to routine care in CIDs and other diseases.
本报告旨在探讨通过电子问卷收集慢性炎症性疾病（CID）患者自我报告结局（PRO）的可行性。
在两个医学科室对确诊为系统性红斑狼疮、原发性干燥综合征或炎症性肠病的连续门诊患者进行随访。在六个月的时间里，患者每月收到包含SF36、医院焦虑抑郁量表和一个类似症状量表的电子邮件。分析参与率、社会人口学特征和患者满意度。
共纳入128例患者（79%为女性；平均年龄：42±12岁）。82%的问卷被退回。每月参与率在89%至77%之间，六个月的损耗率为13%。问卷的平均完成率为98%。与回答率增加显著相关的因素有：已婚/有伴侣状态、家中孩子数量较多以及之前参与过在线调查。未回复的主要原因是：“太忙无法参与”（35%）和“家中无法上网”（31%）。总体而言，68%的参与者认为该研究方便，96%的参与者同意以每月或每两个月的频率继续参与。
在CID患者中，通过网络在家中自我评估PRO是可行的。患者感到满意并愿意继续参与调查。互联网能够即时且全面地将PRO呈现给临床医生。有必要开展进一步研究，以确定PRO监测如何有助于CID及其他疾病的常规护理。
