Introduction: Several studies have shown a reduced quality of life (QoL) in patients with Addisons disease (AD). However, by now there are no data investigating the changes of QoL over a long-term course. Adrenal crises (AC) are frequent and potentially life-threatening complications in patients with AD. Since no reliable laboratory indicator can predict impending crises it is difficult to detect patients at increased risk. The purpose of this study was to test whether the repeated use of questionnaires for self-assessment over longer periods can detect possible prodromal periods of an AC.
Methods: 137 patients with AD were included. They were asked to complete the disease specific-quality of life questionnaire AddiQoL once monthly over a period of ten months. In addition they also completed a short questionnaire about adverse events during the last month. 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.
Results: 110 patients completed the study by fulfilling at least 9 of the 10 required sets of questionnaires and not exceeding a time-lag over more than three months. Seven patients suffered an AC, resulting in 7.6 crises/100 patient years. AddiQoL scores in patients with adrenal crises showed a trend (P=0.058) to a wider fluctuation over the ten months. 19 Patients reported about severe adverse events not fulfilling the named criteria of AC. In these patients we found a significantly lower median (P=0.017) of the AddiQoL scores compared to patients not suffering a pre-crisis.
Conclusions: These are the first data showing the course of QoL during a period of ten months in patients with AD. Prevalence of AC lay by 7.6 per 100 patient years, in accordance with previous data. Our data show, that relevant medical adverse events in patients with AD are associated with a lower QoL. Furthermore, such events affect intraindividual AddiQol-scores over time with a trend to a stronger fluctuation. Long-term assessment of AddiQol and assessment of adverse events, e.g. via patient diaries, may be applied as an additional clinical tool to identify patients at risk for critical events.
20 - 23 May 2017
European Society of Endocrinology