SAT-443 - Patient-Reported Data Characterizes Adrenal Crisis as A Continuum

Background

Adrenal crisis is a life-threatening emergency due to absolute or relative cortisol insufficiency. Focus on late-stage findings and measurements have resulted in clinical definitions of adrenal crisis that fail to capture the full spectrum of symptomatology and evolution. Pre-hospital and emergency providers often overlook early symptoms and neglect to provide timely treatment. Delaying interventions until end-stage shock criteria are fulfilled contributes to substantial morbidity and mortality. Utilizing a patient-centered approach, we hypothesized that patient experiences would clarify early manifestations of a crisis.

Methods

Signs and symptoms associated with adrenal crisis from the medical literature were collated to compile a list of features associated with the event. Based on this list, a patient focus group (n= 10) communicated their adrenal crisis experiences to generate a draft for a stepwise definition. A second patient validation group (n=135) prospectively evaluated this draft definition of crisis.

Results

The patients in the initial focus group expanded the breadth of symptomatology and variability in time course. The validation group strongly affirmed the initial staged definition as follows: Stage 1, Early, represents a distinct change in symptoms from baseline; Stage 2, Intermediate, realizes the progression in number or severity of symptoms; Stage 3, Late, recognizes loss of function, multi-organ system failure, and move toward hemodynamic collapse. Of the validation group respondents, 54% experienced crisis evolving over hours with increasing number or severity of symptoms; 18% developed crisis symptoms over one or more days. Importantly, 87% agreed with the practicality of a staged definition. Symptoms reported by patients extended across multiple body systems and differed widely between patients. Patients described symptoms evolving from mild to worse in 92% of crisis reports and emphasized the possibility of entering crisis at any stage. The patients consistently reported much variability in the extent of symptoms and the time course during the crisis.

Conclusions

Inclusion of real patient voices in this assessment of symptoms expands the definition of adrenal crisis. Adrenal crisis cannot be viewed solely as hypovolemic shock. Rather, patients have revealed that adrenal crisis is a continuum with inconsistent time course and often rapid progression from one stage to the next. Timely identification enables prompt interventions. Recognizing a continuum of symptoms allows for the development of a staged definition that will facilitate prompt diagnosis, earlier treatment, strengthen patient safety and enhance patient and provider education. Prospective studies are underway to corroborate this expanded definition of adrenal crisis. Patient input of lived experience adds valuable data to expand our understanding of adrenal crisis.

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