Department of Public Health Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway.
Department of Gastroenterology, Oslo University Hospital, P.O. Box 1089, Blindern, Oslo, 0318, Norway.
BMC Gastroenterol. 2024 May 24;24(1):184. doi: 10.1186/s12876-024-03272-1.
Providing relevant digital health information of high quality may promote treatment adherence and self-management for patients with inflammatory bowel disease. The development of digital health services is optimised by considering end users' needs.
To identify key aspects required for digital promotion of inflammatory bowel disease patients' self-management by exploring their health information needs and the preferences of both patients and healthcare professionals in relation to the digital provision of inflammatory bowel disease health services.
Data from an audit of 1,481 electronic health record summaries from an inflammatory bowel disease help line, 17 semi-structured interviews with inflammatory bowel disease patients and 2 focus group interviews with 11 healthcare professionals were analysed.
Patients primarily contacted the hospital due to concerns about symptoms, examinations and tests, and medicines. Their concerns appeared to vary according to diagnosis, gender, age and disease duration. The interviews identified two overarching themes: (1) the available health information and patients' health information needs, and (2) whishes, thoughts and preferences for a digital solution in IBD care with relevant and individualised information.
The findings delineate key aspects for developing a suitable digital health information service. Patients seek information from healthcare professionals about treatment; however, in a digital solution, they want access to relevant and practical information about the disease, treatment and self-management. Both patients and healthcare professionals saw opportunities for increasing health data availability to patients. However, healthcare professionals expressed concerns about adapting, maintaining and ensuring the relevance of patient health information without increasing their workload and, thus, reducing quality of care.
提供高质量的相关数字健康信息可能会促进炎症性肠病患者的治疗依从性和自我管理。通过考虑最终用户的需求，可以优化数字健康服务的开发。
通过探索炎症性肠病患者的健康信息需求以及患者和医疗保健专业人员对炎症性肠病健康服务数字提供的偏好，确定数字促进炎症性肠病患者自我管理所需的关键方面。
对炎症性肠病帮助热线的 1481 份电子健康记录摘要进行审核，对 17 名炎症性肠病患者进行半结构化访谈，对 11 名医疗保健专业人员进行 2 次焦点小组访谈，对这些数据进行了分析。
患者主要因症状、检查和测试以及药物问题而联系医院。他们的关注点似乎根据诊断、性别、年龄和疾病持续时间而有所不同。访谈确定了两个总体主题：（1）现有的健康信息和患者的健康信息需求；（2）对 IBD 护理中具有相关和个性化信息的数字解决方案的愿望、想法和偏好。
研究结果描绘了开发合适的数字健康信息服务的关键方面。患者向医疗保健专业人员寻求有关治疗的信息；但是，在数字解决方案中，他们希望获得有关疾病、治疗和自我管理的相关实用信息。患者和医疗保健专业人员都认为有机会增加患者的健康数据可用性。然而，医疗保健专业人员对适应、维护和确保患者健康信息的相关性表示担忧，而不会增加他们的工作量，从而降低护理质量。
