Department of Ophthalmology, University of Padova, 35128 Padova, Italy.
IRCCS-Fondazione Bietti, 00198 Rome, Italy.
Int J Environ Res Public Health. 2022 Jul 30;19(15):9367. doi: 10.3390/ijerph19159367.
The study retraces the healthcare pathway of patients affected by diabetic macular edema (DME) through the direct voice of patients and caregivers by using a "patient journey" and narrative method approach. The mapping of the patient's journey was developed by a multidisciplinary board of health professionals and involved four Italian retina centers. DME patients on intravitreal injection therapy and caregivers were interviewed according to the narrative medicine approach. Narratives were analyzed through a quali-quantitative tool, as set by the narrative medicine method. The study involved four specialized retina centers in Italy and collected a total of 106 narratives, 82 from DME patients and 24 from caregivers. The narratives reported their difficulty in identifying the correct pathway of care because of a limited awareness of diabetes and its complications. Patients experienced reduced autonomy due to ocular complications. In the treatment of diabetes and its complications, a multidisciplinary approach currently appears to be missing. DME reduces the quality of life of affected patients. The narrative medicine approach offers qualitative and emotional patient-guided information. The patient journey provides all of those involved in the management of DME with flowcharts to refer to, identifying the critical points in the healthcare journey of DME patients to improve the management of the disease.
该研究通过使用“患者旅程”和叙述方法，直接听取患者和护理人员的意见，追溯受糖尿病性黄斑水肿（DME）影响的患者的医疗保健路径。患者旅程的绘制由一个多学科的医疗保健专业人员委员会开发，并涉及四个意大利视网膜中心。根据叙述医学方法，对接受玻璃体内注射治疗的 DME 患者和护理人员进行了访谈。通过叙述医学方法设定的定性-定量工具对叙述进行了分析。该研究涉及意大利的四个专门的视网膜中心，共收集了 106 个叙述，其中 82 个来自 DME 患者，24 个来自护理人员。这些叙述报告说，由于对糖尿病及其并发症的认识有限，他们难以确定正确的护理途径。眼部并发症使患者的自主性降低。在糖尿病及其并发症的治疗中，目前似乎缺少多学科方法。DME 降低了受影响患者的生活质量。叙述医学方法提供了定性和情感的以患者为导向的信息。患者旅程为参与 DME 管理的所有人提供了流程图，以确定 DME 患者医疗保健旅程中的关键点，从而改善疾病的管理。
