Neville Carolyn, DaCosta Deborah, Rochon Murray, Eng Davy, Fortin Paul R
Division of Clinical Epidemiology, Department of Medicine, McGill University Health Centre, Montreal, QC, Canada.
JMIR Res Protoc. 2014 Dec 22;3(4):e65. doi: 10.2196/resprot.3349.
Systemic lupus erythematosus is an inflammatory autoimmune disease associated with high morbidity and unacceptable mortality. Information and management tools are needed to help persons with lupus cope with their illness and facilitate health care providers in the delivery of care.
The objective of the study was to assess the needs and find solutions to support persons with lupus and their health care providers.
Web-based surveys were distributed across Canada to persons with lupus and their relatives (n=3119), rheumatologists (n=517), and arthritis health professionals (AHPs) (n=226) by Lupus Canada, the Canadian Rheumatology Association, and the Arthritis Health Professions Association, respectively.
The survey sample comprised 665 (21.3%) persons with lupus, 98 (19.0%) rheumatologists, and 74 (32.7%) AHPs. Among the participants with lupus, 92.4% were female, the average age was 46.8 (SD 12.7) years, 79.2% were Caucasian, and 58.8% were employed. All Canadian provinces and territories were represented. The majority (43.3%) of respondents were from Ontario. Mean disease duration was 10.2 (SD 9.5) years, and 41.9% rated their global assessment as fair or poor. There was high agreement between lupus participants and health care providers regarding disease-specific information topics. All groups rated topics related to lupus, fatigue, medications, and stress as most important. Ratings differed among lupus participants and their health care providers regarding perceived helpfulness of some of the patient tools, such as the option to view test results. Needs differed for persons with lupus based on age, sex, depression, stress, and disease activity. Differences in health care provider needs were based on amount of experience in treating lupus.
Information and support tools needed for persons with lupus and their health care providers were identified. These results will help guide us in the development of a Web-based Lupus Interactive Navigator as an intervention tool to help persons with lupus self-manage their disease and to facilitate heath care providers in clinical management.
系统性红斑狼疮是一种炎症性自身免疫性疾病，发病率高且死亡率令人难以接受。需要信息和管理工具来帮助狼疮患者应对疾病，并协助医疗保健提供者提供护理。
本研究的目的是评估需求并找到支持狼疮患者及其医疗保健提供者的解决方案。
加拿大狼疮协会、加拿大风湿病协会和关节炎健康专业人员协会分别在加拿大范围内向狼疮患者及其亲属（n = 3119）、风湿病学家（n = 517）和关节炎健康专业人员（AHPs）（n = 226）开展基于网络的调查。
调查样本包括665名（21.3%）狼疮患者、98名（19.0%）风湿病学家和74名（32.7%）AHPs。在狼疮患者参与者中，92.4%为女性，平均年龄为46.8（标准差12.7）岁，79.2%为白种人，58.8%受雇。加拿大所有省份和地区均有代表。大多数（43.3%）受访者来自安大略省。平均病程为10.2（标准差9.5）年，41.9%的人将其整体评估评为一般或较差。狼疮患者与医疗保健提供者在疾病特定信息主题上高度一致。所有群体都将与狼疮、疲劳、药物和压力相关的主题评为最重要。狼疮患者及其医疗保健提供者对一些患者工具（如查看检测结果的选项）的感知帮助程度评分存在差异。狼疮患者的需求因年龄、性别、抑郁、压力和疾病活动而有所不同。医疗保健提供者的需求差异基于治疗狼疮的经验量。
确定了狼疮患者及其医疗保健提供者所需的信息和支持工具。这些结果将有助于指导我们开发基于网络的狼疮互动导航器，作为一种干预工具，帮助狼疮患者自我管理疾病，并协助医疗保健提供者进行临床管理。
