Elizaveta Bokova, Ismael Elhalaby, Ninad Prasade, Margaret Martin-McLain, Wendy E Lewis, Christine N Feira, Irene Isabel P Lim, Rebecca M Rentea
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引用次数: 0
Abstract
Purpose: Anorectal malformations (ARMs) are rare congenital anomalies causing altered anatomy and frequent hospitalizations. Parental awareness and clear communication are crucial in family-centered care. This study assesses the impact of patient-held ARM Medical Alert Cards on healthcare providers and caregivers.
Methods: Caregivers of children with ARMs, including cloacal anomalies, received Medical Alert Cards with (1) contact details; (2) disease-related information; and (3) patient-specific data. A survey evaluated these cards' effectiveness in enhancing ARM awareness among healthcare professionals and caregivers.
Results: Among 33 respondents, 29 (88%) found the cards helpful in increasing ARM awareness. Both caregivers and providers found the content coherent, with a median readability score of 9 (IQR 8-10). The card layout was well-received by 30 out of 32 respondents (94%), and all noted the clarity of the contact details, facilitating patient referrals to specialized care. Most caregivers (13 out of 14, 93%) expressed willingness to use these cards in medical settings. Suggestions for improvement included adding more patient-specific information, enhancing readability, and providing visual anatomy diagram.
Conclusion: Medical Alert Cards for patients with ARMs can enhance understanding of ARMs among caregivers and healthcare providers, serving as a vital tool in patient-centered management strategies tailored to individual needs.
目的：肛门直肠畸形（ARMs）是一种罕见的先天性畸形，会导致解剖结构改变和频繁住院。在以家庭为中心的护理中，家长的意识和清晰的沟通至关重要。本研究评估了患者持有的 ARM 医疗警报卡对医疗服务提供者和护理人员的影响：方法：ARM（包括泄殖腔异常）患儿的护理人员收到了医疗警示卡，上面有（1）联系方式；（2）疾病相关信息；（3）患者的具体数据。一项调查评估了这些卡片在提高医护人员和护理人员对 ARM 的认识方面的效果：结果：在 33 位受访者中，29 位（88%）认为这些卡片有助于提高对 ARM 的认识。护理人员和医疗服务提供者都认为卡片内容连贯，可读性中位数为 9 分（IQR 8-10）。在 32 位受访者中，有 30 位（94%）对卡片的版面设计表示满意，所有受访者都注意到了联系方式的清晰度，这有助于患者转介到专业医疗机构。大多数护理人员（14 人中有 13 人，占 93%）表示愿意在医疗场所使用这些卡片。改进建议包括增加更多针对患者的信息、提高可读性以及提供直观的解剖图：针对 ARM 患者的医疗警示卡可以增强护理人员和医疗服务提供者对 ARM 的了解，是以患者为中心、根据个人需求制定管理策略的重要工具。
期刊介绍：
Pediatric Surgery International is a journal devoted to the publication of new and important information from the entire spectrum of pediatric surgery. The major purpose of the journal is to promote postgraduate training and further education in the surgery of infants and children.
The contents will include articles in clinical and experimental surgery, as well as related fields. One section of each issue is devoted to a special topic, with invited contributions from recognized authorities. Other sections will include:
-Review articles-
Original articles-
Technical innovations-
Letters to the editor
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