Ammerlaan Judy W, van Os-Medendorp Harmieke, de Boer-Nijhof Nienke, Maat Bertha, Scholtus Lieske, Kruize Aike A, Bijlsma Johannes W J, Geenen Rinie
University Medical Center Utrecht, Department Rheumatology and Clinical Immunology, HPN D02.244, P.O. Box 85500, 3508 GA Utrecht, The Netherlands.
University Medical Hospital Utrecht, Department Dermatology and Allergology, HPN D02.244, P.O. Box 85500, 3508 GA Utrecht, The Netherlands.
Patient Educ Couns. 2017 Mar;100(3):501-508. doi: 10.1016/j.pec.2016.10.009. Epub 2016 Oct 13.
Aim of this study was to investigate preferences and needs regarding the structure and content of a person-centered online self-management support intervention for patients with a rheumatic disease.
A four step procedure, consisting of online focus group interviews, consensus meetings with patient representatives, card sorting task and hierarchical cluster analysis was used to identify the preferences and needs.
Preferences concerning the structure involved 1) suitability to individual needs and questions, 2) fit to the life stage 3) creating the opportunity to share experiences, be in contact with others, 4) have an expert patient as trainer, 5) allow for doing the training at one's own pace and 6) offer a brief intervention. Hierarchical cluster analysis of 55 content needs comprised eleven clusters: 1) treatment knowledge, 2) societal procedures, 3) physical activity, 4) psychological distress, 5) self-efficacy, 6) provider, 7) fluctuations, 8) dealing with rheumatic disease, 9) communication, 10) intimate relationship, and 11) having children.
A comprehensive assessment of preferences and needs in patients with a rheumatic disease is expected to contribute to motivation, adherence to and outcome of self-management-support programs.
The overview of preferences and needs can be used to build an online-line self-management intervention.
本研究旨在调查风湿病患者对以患者为中心的在线自我管理支持干预措施的结构和内容的偏好及需求。
采用包括在线焦点小组访谈、与患者代表的共识会议、卡片分类任务和层次聚类分析在内的四步程序来确定偏好和需求。
对结构的偏好包括：1）适合个人需求和问题；2）符合生活阶段；3）创造分享经验、与他人联系的机会；4）有专家患者作为培训师；5）允许按自己的节奏进行培训；6）提供简短干预。对55项内容需求的层次聚类分析包括11个类别：1）治疗知识；2）社会程序；3）体育活动；4）心理困扰；5）自我效能感；6）提供者；7）病情波动；8）应对风湿病；9）沟通；10）亲密关系；11）生育。
对风湿病患者的偏好和需求进行全面评估有望提高自我管理支持项目的动机、依从性和效果。
偏好和需求概述可用于构建在线自我管理干预措施。
