Power Beverley
Management Committee, CDH UK - The Congenital Diaphragmatic Hernia Charity, King's lynn, United Kingdom.
Front Pediatr. 2023 Feb 21;11:1052422. doi: 10.3389/fped.2023.1052422. eCollection 2023.
Congenital Diaphragmatic Hernia is a malformation of the diaphragm resulting in ongoing clinical symptoms and problems. Mortality remains high, particularly where there are other issues involved. Tracking a patient throughout their lifetime to understand the full impact on health and function is challenging. CDH UK is a registered charity supporting anyone affected by CDH. It has over 25 years of experience and a broad range of patient experience and knowledge.
To develop a patient journey with timepoints of significance.
We studied our own data and looked at what we already knew from publications and medical advisors. We recruited a focus group, plotted out stages and timepoints through their "lived" experiences using the Team Idea Mapping method. We then compared these experiences to our own data, to identify the common issues in daily life and care.
We have developed a patient journey through the eyes of the patient and turned it into a patient friendly infographic. This can be used as a tool to help understand the CDH Journey throughout a patient's lifetime. CDH UK has already used this to create a first prototype of a mobile application. It has also further helped to recognize areas of patient concern and to improve services and resources.
This can be used as a basis for care and research, including standards, benchmarking, transition and helping improvements in healthcare, education, family life and social settings. Potentially holding clues as to the etiology and pathology of the condition and an opportunity to further explore theories and unanswered questions. It may help improve counselling and bereavement care, resulting in better general and mental health outcomes.
先天性膈疝是一种膈肌畸形，会导致持续的临床症状和问题。死亡率仍然很高，尤其是在涉及其他问题的情况下。跟踪患者一生以了解对健康和功能的全面影响具有挑战性。英国先天性膈疝协会是一家注册慈善机构，为任何受先天性膈疝影响的人提供支持。它拥有超过25年的经验以及广泛的患者经验和知识。
制定一个具有重要时间节点的患者病程。
我们研究了自己的数据，并查看了我们从出版物和医学顾问那里已经了解到的信息。我们招募了一个焦点小组，使用团队思维导图方法，通过他们的“生活”经历描绘出各个阶段和时间节点。然后我们将这些经历与我们自己的数据进行比较，以确定日常生活和护理中的常见问题。
我们从患者的角度制定了一个患者病程，并将其转化为一个对患者友好的信息图表。这可以用作一种工具，以帮助了解患者一生的先天性膈疝病程。英国先天性膈疝协会已经用此创建了一个移动应用程序的首个原型。它还进一步有助于识别患者关注的领域，并改善服务和资源。
这可以作为护理和研究的基础，包括标准、基准、过渡以及帮助改善医疗保健、教育、家庭生活和社会环境。可能为该病症的病因和病理提供线索，并提供进一步探索理论和未解决问题的机会。它可能有助于改善咨询和丧亲护理，从而带来更好的总体和心理健康结果。
