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.
Keywords: Anorectal malformation; Cloaca; Family-centered care; Healthcare communication; Medical Alert Cards; Pediatric surgery.
© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.