Riedl Marc A, Johnston Douglas T, Anderson John, Meadows J Allen, Soteres Daniel, LeBlanc Stephen B, Wedner H James, Lang David M
Division of Rheumatology, Allergy, and Immunology, Department of Medicine, University of California San Diego, San Diego, California.
Carolina Asthma and Allergy Center, Charlotte, North Carolina.
Ann Allergy Asthma Immunol. 2022 May;128(5):526-533. doi: 10.1016/j.anai.2021.09.026. Epub 2021 Oct 7.
People living in rural areas of the United States experience greater health inequality than individuals residing in urban or suburban locations and encounter several barriers to obtaining optimal health care. Health disparities are compounded for patients with rare diseases such as hereditary angioedema (HAE), an autosomal dominant genetic disorder characterized by recurrent, severe abdominal pain and life-threatening oropharyngeal or laryngeal swelling.
To explore the challenges of managing patients with HAE in rural areas and suggest possible improvements for optimizing care.
PubMed was searched for articles on patient care management, treatment challenges, rural health, and HAE.
Relevant articles were selected and reviewed.
Challenges in managing HAE in the rural setting were identified, including obtaining a diagnosis of HAE, easy access to a physician with expertise in HAE, continuity of care, availability of telemedicine services, access to approved HAE therapies, patient education, and economic barriers to treatment. Ways to improve HAE patient care in rural areas include health care provider recognition of the patient with undiagnosed HAE, development of individualized management plans, expansion of telemedicine, effective care at the local level, appropriate access to HAE medication, and increased awareness of patient support and advocacy groups.
For patients with HAE living in rural areas, optimal care is complicated by health disparities. Given the scarcity with which these topics have been covered in the literature to date, it is intended that this article will serve as the impetus for a range of further initiatives focused on improving access to care.
生活在美国农村地区的人们比居住在城市或郊区的人面临更大的健康不平等，并且在获得最佳医疗保健方面遇到若干障碍。对于患有罕见疾病（如遗传性血管性水肿，一种常染色体显性遗传病，其特征为反复出现严重腹痛以及危及生命的口咽或喉部肿胀）的患者而言，健康差距更为突出。
探讨在农村地区管理遗传性血管性水肿患者所面临的挑战，并提出优化护理的可能改进措施。
检索了PubMed上有关患者护理管理、治疗挑战、农村卫生以及遗传性血管性水肿的文章。
挑选并审阅了相关文章。
确定了在农村地区管理遗传性血管性水肿的挑战，包括遗传性血管性水肿的诊断、方便找到有遗传性血管性水肿专业知识的医生、护理的连续性、远程医疗服务的可及性、获得批准的遗传性血管性水肿治疗方法、患者教育以及治疗的经济障碍。改善农村地区遗传性血管性水肿患者护理的方法包括医疗保健提供者识别未确诊的遗传性血管性水肿患者、制定个性化管理计划、扩大远程医疗、在当地提供有效的护理、适当获取遗传性血管性水肿药物以及提高对患者支持和倡导团体的认识。
对于生活在农村地区的遗传性血管性水肿患者而言，健康差距使最佳护理变得复杂。鉴于迄今为止这些主题在文献中涉及较少，本文旨在推动一系列旨在改善医疗服务可及性的进一步举措。
