Abstract and Introduction
Background: Patients with adrenal insufficiency (AI) require lifelong glucocorticoid (GC) replacement. AI patients need to adjust GC dosage in response to stressful events and illness in order to prevent life-threatening adrenal crisis (AC).
Aim: To evaluate self-management of patients with AI.
Methods: Four German centres, which are using patient's diary as part of their routine clinical practice, instructed AI patients to prospectively document any discomfort, intercurrent illness or stressful events as well as changes in GC therapy on a daily basis. Diaries of 80 patients (44 females, 52.9 ± 15.9 years, 34 primary AI) were collected and analysed. A symptom score sheet was used to evaluate severity of discomfort.
Results: In total, 34 074 patient days (93.4 years) were recorded. 4622 days with discomfort were documented. On 35% of those days (n = 1621), patients increased their GC dose (4.8% of all days). Patients who recorded discomfort had a median of four episodes of discomfort, which lasted a median of 2 days. Women documented significantly more episodes of discomfort than men (P = 0.014). Low-to-median symptom scores resulted in GC increase by 50%-60%, whereas high symptom scores and/or fever resulted in doubling GC daily dose. However, dose increase was only 55% in situations indicating gastrointestinal (GI) infection.
Conclusion: Severe discomfort did not always result in dose increase, especially in GI infection. However, low symptom scores resulted in an inappropriate GC increase in some patients. This underscores an urgent need for improved training methods. Keeping daily records might be a useful tool for continued and individualized patient education.
Patients with adrenal insufficiency (AI) require lifelong glucocorticoid (GC) replacement therapy.[1,2] Recommended daily hydrocortisone doses in AI are lower than estimated before, ranging nowadays between 10 and 25 mg/d.[2–4] However, this recommendation reflects an average dosage during the day and may not cover additional needs of GCs caused by unforeseen stressors and situations. Due to the lowering of the daily dose over the recent decades, patients require instructions how to adapt their dose according to daily needs in a more flexible manner. It is a well-established practice that patients should double or triple their daily dose in situations with fever or severe infections. However, dose adaptation is much less well-established and matter of discussion in situations such as sport, dentist treatment, psychological stress or episodes of general discomfort. It is thought by some endocrinologists that in cases of defined strong and prolonged physical activity (eg intensive fitness training or running for several hours) an additional hydrocortisone dose of 5–10 mg might be necessary. However, this is eminence- and not evidence-based due to the lack of trials. Only a few studies investigated this topic suggesting that short physical activity does not seem to require additional doses adaptation.[6,7] Furthermore, some endocrine practices are in favour of an additional dose of hydrocortisone in situations of severe and prolonged psychological stress (eg death of a relative and acute depression) as such conditions have also been reported to cause adrenal crisis (AC). However, also for this procedure no evidence does exist. There is general acceptance that short lasting stressors usually do not routinely require dose adaptation; however, studies and data on these situations are missing too.
The current Endocrine Society guidelines suggest patient education about increasing the GC dosage during intercurrent illness, fever and stress emphasizing that this education should include identification of precipitating symptoms and signs and how to act in impending AC. Therefore, daily dose adjustments need to be initiated by the patients without having the possibility of consulting a doctor or an endocrine nurse in these specific situations.
To guarantee a correct daily dose adjustment, patients need to be instructed and patient education is essential. Until recently, teaching in Germany was most often performed on an individual basis during the clinical visit of the patient. A structured teaching programme has been implemented in the Netherlands and proved to be beneficial especially regarding improved patient's knowledge about their disease, dose adaptation in situations of intercurrent illness and emergency situations. The increase in knowledge about one's own disease is necessary because recent data report poor adherence of AI patients and reveal many concerns regarding patients' GC replacement therapy and possible side events. Therefore, we recently started to develop and implement a structured teaching programme in Germany. This was initiated by seven tertiary endocrine centres across Germany and the section "Nebenniere, Steroide und Hypertonie" of the German endocrine society (DGE) by the end of 2014. Some of those centres were using patient's diaries as an individual teaching tool at that timepoint.
We were interested in the day-to-day management of GC replacement therapy in AI patients in real life and to identify shortcomings in the patient's behaviour in situations which might lead into life-threatening AC. We assumed that the knowledge of patient's behaviour and dose adaptions might prove helpful also in establishing a nationwide teaching programme. Therefore, we collected patients' diaries from 80 patients with AI in 2014 and analysed them regarding daily dose adaptation.
Clin Endocrinol. 2019;91(2):256-262. © 2019 Blackwell Publishing