Weill Cornell Medical College and the Hospital for Special Surgery, New York, New York.
University of Alabama at Birmingham.
Arthritis Care Res (Hoboken). 2019 Jan;71(1):80-87. doi: 10.1002/acr.23580.
To identify the perspectives of patients with rheumatoid arthritis (RA) on electronic recording of between-visit disease activity and other patient-reported outcomes (PROs) and on sharing this information with health care providers or peers.
Patients with RA were recruited to participate in focus groups from December 2014 to April 2015. The topic guide and analysis were based on the Andersen-Newman framework. Sessions were audiorecorded, transcribed, independently coded, and analyzed for themes.
Thirty-one patients participated in 7 focus groups. Their mean ± SD age was 51 ± 13.1 years, 94% were women, 52% were African American, 11% were Hispanic, and 37% were white. Three themes emerged: provider communication, information-seeking about RA, and social and peer support. Participants expressed a willingness to track disease activity data to share with health care providers electronically if providers would act on the information. Participants envisioned symptom tracking and information sharing as a mechanism to relay and obtain reliable information about RA. Participants were also interested in electronic communication between visits if it facilitated learning about symptom management and enhanced opportunities for social support among patients with RA.
Patients with RA may be amenable to electronic collection and sharing of PRO-type data between clinical encounters if it facilitates communication with health care providers and provides access to reliable information about RA. Providing patients with social support was important for enhancing PROs collection by helping them overcome barriers by using electronic devices and overcome reservations about the value of these data.
确定类风湿关节炎（RA）患者对就诊间疾病活动度和其他患者报告结局（PRO）的电子记录以及与医疗保健提供者或同行共享这些信息的看法。
从 2014 年 12 月至 2015 年 4 月，招募 RA 患者参加焦点小组。主题指南和分析基于安德森-纽曼框架。会议进行了录音、转录、独立编码和主题分析。
31 名患者参加了 7 个焦点小组。他们的平均年龄±SD 为 51±13.1 岁，94%为女性，52%为非裔美国人，11%为西班牙裔，37%为白人。出现了三个主题：提供者沟通、对 RA 的信息寻求以及社会和同伴支持。参与者表示，如果提供者会对信息采取行动，他们愿意通过电子方式跟踪疾病活动数据并与医疗保健提供者共享。参与者设想症状跟踪和信息共享是一种传递和获取有关 RA 的可靠信息的机制。如果电子通信可以促进症状管理的学习并为 RA 患者提供更多的社交支持机会，参与者也对就诊间的电子通信感兴趣。
如果电子收集和共享 PRO 型数据有助于与医疗保健提供者进行沟通并提供有关 RA 的可靠信息，RA 患者可能会接受就诊间的电子收集和共享。为患者提供社交支持对于通过帮助他们克服使用电子设备的障碍和克服对这些数据价值的保留意见来增强 PRO 数据的收集非常重要。
