Thomassen Britt J M, Hendrix Evelien M B, Mujagic Zlatan, Smeets Fabiënne G M, de Jong Marin J, Gevers Tom J G, Veldhuijzen Govert, van der Horst Daniëlle, Scherpenzeel Menne, Dijkstra Gerard, Kimman Merel L, Ament Stephanie M C, Pierik Marieke J
Department of Gastroenterology and Hepatology, Maastricht University Medical Centre+, PO box 5800, Maastricht, 6202 AZ, The Netherlands.
Institute for Nutrition and Translational Research in Metabolism (NUTRIM), Maastricht University, PO box 616, Maastricht, 6200 MD, The Netherlands.
BMC Health Serv Res. 2025 May 10;25(1):681. doi: 10.1186/s12913-025-12823-5.
Inflammatory Bowel Disease (IBD) is an increasingly prevalent chronic condition that impacts the lives of patients and their relatives, and burdens healthcare systems. Redesigning care processes is warranted, with digital technologies offering opportunities to increase efficiency and reduce workloads. However, successful innovations require meaningful involvement of patients and informal caregivers. In this study, we aimed to identify what IBD patients and their informal caregivers value in IBD care.
A purposive sample of 18 IBD patients and 8 informal caregivers was drawn from an academic and a non-academic hospital in the Netherlands. Semi-structured interviews with a narrative approach focused on capturing real-life experiences and personal stories related to IBD care. Transcripts were analysed using inductive thematic analysis.
Patients and informal caregivers valued clear information and support regarding the disease, treatment, and daily management, along with active involvement in treatment planning. Regular contact with the same trusted healthcare professionals (HCPs), and effective treatment that alleviates symptoms and enables normal living, were deemed important. Patients appreciated a holistic, personalized approach. They welcomed remote care for follow-up and self-management, as long as the remote monitoring program was trustworthy and included easily accessible outpatient care if needed. Informal caregivers valued attentive HCPs who take patients seriously.
Key elements of IBD care valued by patients and informal caregivers include comprehensive support, active involvement, a person-centred approach, easy access to outpatient care, regular follow-ups with trusted HCPs, and remote care complementing outpatient services. Innovation teams should consider these elements when refining and developing innovations in IBD care.
炎症性肠病（IBD）是一种日益普遍的慢性疾病，影响着患者及其亲属的生活，并给医疗系统带来负担。重新设计护理流程是必要的，数字技术为提高效率和减轻工作量提供了机会。然而，成功的创新需要患者和非正式护理人员的有意义参与。在本研究中，我们旨在确定IBD患者及其非正式护理人员在IBD护理中看重什么。
从荷兰的一家学术医院和一家非学术医院抽取了18名IBD患者和8名非正式护理人员作为目的抽样样本。采用叙事方法进行半结构化访谈，重点是捕捉与IBD护理相关的现实生活经历和个人故事。使用归纳主题分析法对访谈记录进行分析。
患者和非正式护理人员重视关于疾病、治疗和日常管理的清晰信息和支持，以及积极参与治疗计划。与同一值得信赖的医疗保健专业人员（HCPs）定期联系，以及能缓解症状并使患者能够正常生活的有效治疗，被认为很重要。患者赞赏整体的、个性化的方法。他们欢迎用于随访和自我管理的远程护理，只要远程监测计划值得信赖，并且在需要时包括易于获得的门诊护理。非正式护理人员重视认真对待患者的细心HCPs。
患者和非正式护理人员看重的IBD护理关键要素包括全面支持、积极参与、以人为本的方法、易于获得门诊护理、与值得信赖的HCPs定期随访，以及补充门诊服务的远程护理。创新团队在完善和开发IBD护理创新时应考虑这些要素。
