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首页> 外文期刊>Clinical and Experimental Immunology: An Official Journal of the British Society for Immunology >Paediatric hereditary angioedema: a survey of UK service provision and patient experience
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Paediatric hereditary angioedema: a survey of UK service provision and patient experience

机译：小儿遗传性血管性水肿：英国服务提供情况和患者经验调查

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摘要

Hereditary angioedema (HAE) is a rare disease characterized by episodes of potentially life-threatening angioedema. For affected children in the United Kingdom, there are relatively few data regarding disease prevalence, service organization and the humanistic burden of the disease. To improve knowledge in these areas, we surveyed major providers of care for children with HAE. A questionnaire was sent to major paediatric centres to determine patient numbers, symptoms, diagnostic difficulties, management and available services. In addition, all patients at a single centre were given a questionnaire to determine the experiences of children and their families. Sixteen of 28 centres responded, caring for a total of 111 UK children. Seven children had experienced life-threatening crises. One-third of patients were on long-term prophylactic medication, including C1 inhibitor prophylaxis in four children. Eight centres reported patients who were initially misdiagnosed. Broad differences in management were noted, particularly regarding indications for long-term prophylaxis and treatment monitoring. We also noted substantial variation in the organization of services between centres, including the number of consultants contributing to patient care, the availability of specialist nurses, the availability of home therapy training and the provision of patient information. Ten of 12 patient/carer questionnaires were returned, identifying three common themes: the need to access specialist knowledge, the importance of home therapy and concerns around the direct effect of angioedema on their life. To our knowledge, this study represents the first dedicated survey of paediatric HAE services in the United Kingdom and provides useful information to inform the optimization of services.
机译：遗传性血管性水肿（HAE）是一种罕见疾病，其特征是可能危及生命的血管性水肿发作。对于英国的患病儿童，关于疾病流行率，服务机构和疾病的人道负担的数据相对较少。为了提高在这些领域的知识，我们对HAE儿童的主要护理提供者进行了调查。向主要的儿科中心发送了调查表，以确定患者人数，症状，诊断困难，管理和可用服务。此外，还向单个中心的所有患者提供了一份调查表，以确定儿童及其家庭的经历。 28个中心中有16个做出了回应，总共照顾了111名英国儿童。七个孩子经历了危及生命的危机。三分之一的患者接受了长期预防性药物治疗，其中包括对四名儿童进​​行了C1抑制剂预防。八个中心报告了最初被误诊的患者。注意到管理方面的广泛差异，特别是在长期预防和治疗监测的适应症方面。我们还注意到，各中心之间的服务组织存在很大差异，其中包括为患者护理做出贡献的顾问人数，专职护士的可用性，家庭治疗培训的可用性以及患者信息的提供。返回了12份患者/护理人员调查问卷中的10份，确定了三个共同主题：获取专业知识的需求，家庭治疗的重要性以及对血管性水肿对其生活的直接影响的担忧。据我们所知，该研究代表了英国对儿科HAE服务的首次专门调查，并提供了有用的信息来指导服务的优化。

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