Nielsen Amalie Søgaard, Appel Charlotte W, Larsen Birgit Furstrand, Kayser Lars, Hanna Lisa
Section of Health Service Research, Department of Public Health, University of Copenhagen, Øster Farimagsgade 5, 1014, Copenhagen, Denmark.
School of Health and Social Development, Deakin University, Geelong, Australia.
J Patient Rep Outcomes. 2021 Sep 17;5(1):92. doi: 10.1186/s41687-021-00366-2.
Digital patient reported outcomes are used increasingly in daily care and treatment of inflammatory bowel disease. Their purpose includes increased focus on patient wellbeing, reduction in avoidable follow-up consultations and increased patient self-management. However, implementation issues occur and studies indicate patients may have concerns, particularly regarding having fewer face-to-face consultations. This study aims to explore patients' perspectives of use and non-use of digital patient reported outcomes and to understand the mechanisms underpinning patient reluctance to engage with this health technology.
Sixteen patients with inflammatory bowel disease at a regional hospital in Denmark were interviewed about their experiences of, and perspectives on, digital patient reported outcomes. A certain level of eHealth literacy was found to be a fundamental condition for use, while other factors were barriers or facilitators for use of digital PROs. Patients' main concerns were about potential consequences for their care and relationship with the clinic. Most patients in stable remission were satisfied with the hospital being a "life-line" if their symptoms worsened, and perceived digital patient reported outcomes to be an efficient tool to establish that "life-line". Patients with severe symptoms and a high degree of emotional distress related to their disease valued the potential for digital patient reported outcomes to increase their clinicians' focus on mental health and extra-intestinal symptoms.
This study found that if patients had sufficient digital literacy, they perceived digital patient reported outcomes to be a useful replacement for face-to-face consultations. However, they were concerned about digital patient reported outcomes' effect on the patient-clinician relationship and its ability to detect worsening of symptoms. These concerns may be mitigated by good patient-clinician relationships, and the option for patients to maintain direct telephone contact with their gastroenterology specialist.
数字患者报告结局在炎症性肠病的日常护理和治疗中使用得越来越频繁。其目的包括更加关注患者的健康状况、减少不必要的随访咨询以及增强患者的自我管理能力。然而，在实施过程中出现了一些问题，研究表明患者可能存在担忧，尤其是关于面对面咨询减少的问题。本研究旨在探讨患者对使用和不使用数字患者报告结局的看法，并了解导致患者不愿使用这项健康技术的潜在机制。
对丹麦一家地区医院的16名炎症性肠病患者进行了访谈，询问他们对数字患者报告结局的体验和看法。发现一定程度的电子健康素养是使用的基本条件，而其他因素则是使用数字患者报告结局的障碍或促进因素。患者主要担心这会对他们的治疗以及与诊所的关系产生潜在影响。大多数处于稳定缓解期的患者对医院在症状恶化时作为“生命线”感到满意，并认为数字患者报告结局是建立这条“生命线”的有效工具。患有严重症状且因疾病导致高度情绪困扰的患者重视数字患者报告结局有可能使临床医生更加关注心理健康和肠外症状。
本研究发现，如果患者具备足够的数字素养，他们认为数字患者报告结局是面对面咨询的有用替代方式。然而，他们担心数字患者报告结局对患者与临床医生关系的影响以及其检测症状恶化的能力。良好的患者与临床医生关系以及患者与胃肠病专科医生保持直接电话联系的选择可能会减轻这些担忧。
