Introduction: Little information is available on patients with adrenal insufficiency (AI) in regard to complaints before diagnosis, time until correct diagnosis, false diagnosis, and professional changes due to the diagnosis.
Objective: We retrospectively evaluated circumstances before and at diagnosis of AI in patients with primary and secondary AI by using established Hospital Anxiety and Depression Scale, Short Form-36 and Giessen Complaint List (GBB-24) questionnaires, and a self-established general registration form.
Methods: In this cross-sectional study, questionnaire sets were available from 216 patients (primary AI, n = 99; secondary AI, n = 117). Time duration before treatment, underlying diagnoses, and disease symptoms were verified by questionnaires and review of medical records. Results regarding subjective health status (SHS) were compared with sex- and age-matched controls drawn from questionnaire-specific reference cohorts.
Results: Less than 30% of woman and 50% of men with AI were diagnosed within the first 6 months after onset of symptoms. Twenty percent of patients suffered >5 years before being diagnosed. More than 67% of patients consulted at least 3 physicians, and 68% were primarily false diagnosed. The most common false diagnoses were of psychiatric and gastrointestinal origin. Overall, patients with AI showed an impaired SHS compared with controls, and patients who were diagnosed correctly within 3 months showed a significantly better SHS.
Conclusions: Because of the unspecific symptoms, diagnosis is often delayed, not recognized by physicians or diagnosed falsely. An early diagnosis is necessary and might positively influence SHS in patients with AI.