Division of Endocrinology, Department of Internal Medicine 1, Goethe-University Hospital, Frankfurt, Germany.
Institut for Biostatistics and Mathematic Modelling, Goethe-University, Frankfurt, Germany.
Endocrine. 2018 May;60(2):355-361. doi: 10.1007/s12020-017-1513-0. Epub 2018 Jan 31.
Several studies have shown a reduced quality of life (QoL) in patients with Addison's disease (AD), but investigations of QoL over a long-term course are lacking. Adrenal crises (AC) are life-threatening complications in AD. The purpose of this prospective study was to test whether the repeated use of QoL-questionnaires can detect prodromal periods of an AC.
110 patients with AD were asked to complete the disease specific-QoL questionnaire AddiQoL and a short questionnaire about adverse events once monthly over a period of ten months. AC was defined if at least two of the following symptoms were reported: (a) hypotension, (b) nausea or vomiting, (c) severe fatigue, (d) documented hyponatremia, hyperkalemia, or hypoglycemia, and subsequent parenteral glucocorticoid administration was carried out.
Prevalence of AC was 10.9/100 patient years. AddiQoL scores in patients with AC showed a trend (p = 0,08) to a wider fluctuation over time. Subjective precrises not meeting the criteria for AC were reported by 31 patients who had significantly lower AddiQoL scores (p = 0,018).
These are the first data showing the course of QoL during a period of ten months in patients with AD. Incidence of AC exceeds previous data. Our data show, that subjective precrises in AD associate with lower QoL. AC, as well as precrises affect intraindividual AddiQol-scores over time with a trend to a stronger fluctuation. Longitudinal AddiQol scores and self-reporting of precrises via patient diaries are additional clinical tools to identify higher risk for critical events.
多项研究表明，艾迪生病（Addison's disease，AD）患者的生活质量（quality of life，QoL）降低，但缺乏对长期病程 QoL 的研究。肾上腺危象（adrenocortical crisis，AC）是 AD 的危及生命的并发症。本前瞻性研究旨在检验重复使用 QoL 问卷是否可以检测到 AC 的前驱期。
110 例 AD 患者被要求在 10 个月的时间内每月填写一次疾病特异性 QoL 问卷 AddiQoL 和一份关于不良事件的简短问卷。如果至少有以下两种症状报告，则定义为 AC：（a）低血压，（b）恶心或呕吐，（c）严重疲劳，（d）记录到低钠血症、高钾血症或低血糖症，随后进行静脉糖皮质激素治疗。
AC 的患病率为 10.9/100 患者年。AC 患者的 AddiQoL 评分显示出随时间波动较大的趋势（p=0.08）。31 例不符合 AC 标准的主观前驱期报告，其 AddiQoL 评分明显较低（p=0.018）。
这些是首次显示 AD 患者 10 个月期间 QoL 变化的研究数据。AC 的发病率高于以往数据。我们的数据表明，AD 的主观前驱期与较低的 QoL 相关。AC 和前驱期会随时间影响个体内的 AddiQol 评分，呈波动趋势增强。纵向 AddiQol 评分和通过患者日记报告的前驱期是识别高危重大事件的额外临床工具。
