Notter Antje, Jenni Stefan, Christ Emanuel
Division of Diabetology, Endocrinology and Metabolism, University Hospital of Bern, Inselspital, Switzerland.
nselspital, Switzerland / EndoDia Praxis, Biel, Switzerland.
Swiss Med Wkly. 2018 Jan 26;148:w14586. doi: 10.4414/smw.2018.14586. eCollection 2018.
Adrenal insufficiency is a dangerous clinical condition, leading to significant morbidity or mortality in situations with inadequate glucocorticoid replacement treatment. We aimed to assess preventive measures in adrenal insufficiency and the incidence and risk factors of adrenal crisis, as well as to test the patients' knowledge about their disease.
All patients in May and June 2016 and December 2016 and January 2017 with primary (17.9%) or secondary (82.1%) adrenal insufficiency were prospectively included in this observational study. They completed questionnaires about their personal and medical background, including the occurrence of adrenal crises, and possession of an emergency card and medication. They were asked about self-perceived subjective knowledge of their disease and filled out two multiple-choice tests about the modalities of the glucocorticoid replacement therapy (test A) and dose adaptation in hypothetical clinical situations (test B) in order to objectively test their knowledge.
A total of 56 datasets were available for descriptive and statistical analysis. Overall, 94.6% of the patients were equipped with an emergency card, 64.3% had their daily hydrocortisone with them and 57.1% carried spare hydrocortisone pills. Twelve patients had experienced at least one adrenal crisis. There were 4.4 adrenal crises per 100 disease-years. Precipitating causes for adrenal crises were mainly gastroenteritis, influenza and noncompliance. Globally, the patients' self-perceived, subjective knowledge level was good to very good. In the two objective knowledge tests, however, only 28.9% (test A) and 60.1% (test B) of the questions were answered correctly. Secondary adrenal insufficiency reduced the chance of being in the group with better knowledge in test A.
The incidence of adrenal crisis in Switzerland is lower than described in recent European studies. Although nearly all of the patients carry their emergency cards with them, emergency treatment is available in only about half of the patients. There is a mismatch between subjective and objective knowledge of the disease and the education of patients with adrenal insufficiency needs to be improved.
肾上腺功能不全是一种危险的临床病症,在糖皮质激素替代治疗不足的情况下会导致显著的发病率或死亡率。我们旨在评估肾上腺功能不全的预防措施、肾上腺危象的发生率及危险因素,并测试患者对自身疾病的了解程度。
前瞻性纳入2016年5月、6月、12月及2017年1月所有原发性(17.9%)或继发性(82.1%)肾上腺功能不全的患者进行这项观察性研究。他们完成了关于个人及医疗背景的问卷,包括肾上腺危象的发生情况、是否持有急救卡及药物。询问他们对自身疾病的自我感知主观知识,并填写两份关于糖皮质激素替代治疗方式(测试A)及假设临床情况下剂量调整(测试B)的多项选择题测试,以客观测试他们的知识。
共有56个数据集可用于描述性和统计分析。总体而言,94.6%的患者持有急救卡,64.3%的患者随身携带每日所需氢化可的松,57.1%的患者携带氢化可的松备用丸剂。12名患者经历过至少一次肾上腺危象。每100疾病年有4.4次肾上腺危象。肾上腺危象的诱发原因主要是肠胃炎、流感及不依从。总体而言,患者自我感知的主观知识水平良好至非常好。然而,在两项客观知识测试中,只有28.9%(测试A)和60.1%(测试B)的问题回答正确。继发性肾上腺功能不全降低了在测试A中知识水平较好组的可能性。
瑞士肾上腺危象的发生率低于近期欧洲研究中的描述。尽管几乎所有患者都随身携带急救卡,但只有约一半的患者有急救治疗可用。患者对疾病的主观和客观知识之间存在差距,肾上腺功能不全患者的教育需要改进。