Improved medical-alert ID ownership and utilization in youth with congenital adrenal hyperplasia following a parent educational intervention.
Improved medical-alert ID ownership and utilization in youth with congenital adrenal hyperplasia following a parent educational intervention.
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DOI：
10.1515/jpem-2017-0435
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发表时间：
2018-01-26
期刊：
影响因子：
--
通讯作者：
Kim MS
中科院分区：
文献类型：
--
作者：
Vidmar AP;Weber JF;Monzavi R;Koppin CM;Kim MS
经典型先天性肾上腺皮质增生症（CAH）是一种潜在的危及生命的疾病，肾上腺危象是患病儿童发病和死亡的主要原因。医学警报识别（ID）可以通过识别对时间敏感的关键治疗的需求来预防肾上腺危象的并发症。我们的目标是评估CAH青年使用医疗警报ID的情况，父母对ID的所有权和认识，以及诊所教育干预对ID使用的影响。对50个21-羟化酶缺乏继发的典型CAH青年家系（11.2 ± 5.0岁，58%为女性）进行了前瞻性研究。在基线时对父母进行门诊需求评估调查，并进行教育干预，干预后1个月进行随访需求评估电话调查。质量改进（QI）框架与计划-执行-研究-行动（PDSA）过程改进周期一起使用。基线时，20/50（40%）的CAH家庭拥有医疗警报ID，其中只有10/20（50%）的ID拥有者报告每周使用>3天。只有26/50（52%）的父母知道ID选项。干预后，ID拥有率翻了一番，达到39/50（78%; p < 0.05），ID拥有者的使用率达到100%（39/39），意识提高到42/50（84%; p < 0.05）。五个讲西班牙语的家庭报告的一个令人惊讶的障碍是无法在线订购医疗警报ID。只有一小部分CAH青少年经常佩戴医疗警报ID，但通过临床教育干预可以有效提高利用率。进一步的研究是值得的，以评估潜在的减少发病率和死亡率的肾上腺危象与增加医疗警报ID的使用。
Classical congenital adrenal hyperplasia (CAH) is a potentially life-threatening condition, and adrenal crisis is a major cause of morbidity and mortality in affected children. Medical-alert identification (ID) could prevent complications of adrenal crisis by identifying the need for time-sensitive, critical treatment. Our objectives were to evaluate usage of medical-alert IDs by CAH youth, ownership and awareness of IDs amongst their parents, and the effect of an in-clinic educational intervention on ID utilization. Fifty families of youth with classical CAH secondary to 21-hydroxylase deficiency (11.2 ± 5.0 years old, 58% female) were prospectively studied. An in-clinic needs assessment survey was administered at baseline to parents, paired with an educational intervention, and a follow-up needs assessment phone survey 1 month post-intervention. A quality improvement (QI) framework was utilized with plan-do-study-act (PDSA) process-improvement cycles. At baseline, 20/50 (40%) CAH families owned a medical-alert ID, of which only 10/20 (50%) of ID owners reported usage >3 days per week. Only 26/50 (52%) parents were aware of ID options. Post-intervention, ID ownership doubled to 39/50 (78%; p < 0.05), usage amongst ID owners reached 100% (39/39), and awareness increased to 42/50 (84%; p < 0.05). A surprising barrier reported by five Spanish-speaking families was the inability to order medical-alert IDs online. Only a small percentage of CAH youth frequently wear a medical-alert ID, but utilization can be effectively improved with an in-clinic educational intervention. Further study is merited to assess a potential reduction in morbidity and mortality of adrenal crisis with increased medical-alert ID utilization.
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