Exploration of knowledge and understanding in patients with primary adrenal insufficiency: a mixed methods study

Abstract

BackgroundPrimary adrenal insufficiency (PAI) is a rare and severe condition requiring lifelong steroid replacement. During acute illness or stressful events, it is important to appropriately adjust glucocorticoid dose; failure to do so may lead to an adrenal crisis. The aim of the study was to explore patients PAI knowledge and understanding of the condition, steroid replacement adjustment during acute illness or stress and provided education.MethodsTen adult patients with PAI were purposefully recruited from two hospitals in a tertiary NHS Trust in England, UK. Data was collected using a mixed method approach utilising semi-structured audio-recorded interviews and hospital case note review. Interviews were transcribed verbatim and analysed using Burnard’s content analysis framework. Information from the hospital case note review was captured using a matrix table based on pre-defined criteria.ResultsFour key themes emerged: ‘Addison’s disease and hydrocortisone replacement’; ‘stress and corticosteroids’; ‘patient compliance/adherence’ and ‘transition’. Patients reported feelings of ‘going through a transition from uncertainty to adaption’ following diagnosis. All participants had a good level of knowledge and understanding of required medication however application in times of need was poor. Medication adherence and prevention of a crisis relied not only on patient knowledge and application but also the support of family and health professionals. Health care professional knowledge required improvement to aid diagnosis and management of PAI.ConclusionPatients with PAI did not apply existing knowledge to adjust steroid dose during acute illness or stress. Although a sample of limited size, our study identified there is a need to further explore why patients with Addison’s disease do not apply existing knowledge during times of increased need. Future research should consider appropriate behaviour change interventions to promote medication adherence to reduce risk of an adrenal crisis.

Perspective of pharmaceutical practice in adrenal insufficiency: An integrative review

“…Rathbun, Nguyen and Singhal (2020), Elshimy, Alghoula andJeong (2020), Huecker, Bhutta andDominique (2021), Munir, Quintanilha and Waseem (2021) specifically mention the monitoring of patients with AI by the pharmacist that should share the responsibility for patient education with doctors and nurses. Shepherd and contributors associated the adherence to the treatment to the proportional knowledge and comprehension of the patients (Shepherd, et al, 2017). Elshimy and colleagues (2020) show that the pharmacist must also guide patients on the adverse effects of treatment with corticosteroids.…”

Management of adrenal insufficiency

“…[2] However, reports highlight gaps in clinician knowledge, particularly on the recognition, and the management of AI. [4,[6][7][8] Given that healthcare professionals have a central role in patient education, it is essential that clinicians, irrespective of grade are familiar with steroid sick day rules and pharmacokinetics to avoid preventable adverse patient outcomes. Furthermore, the increasing use of drugs such as immune checkpoint inhibitors and the endocrinopathy side effects associated with these further supports the need for all physicians, not just endocrinologists, to recognize, and promptly initiate treatment AI.…”

Addison-Krise – Strategien zu Therapie und Prävention

“…Die Problematik unterstreicht die Notwendigkeit der regelmäßigen und ausführlichen Schulung von PatientInnen mit primärer und sekundärer Nebenniereninsuffizienz zur Prävention einer Addison-Krise, zur Erkennung einer Krise und zum korrekten Management derselben. Da jedoch gezeigt werden konnte, dass selbst geschulte PatientInnen vorhandenes Wissen zur Dosissteigerung im Falle einer akuten Erkrankung nicht adäquat anwenden konnten [7], sollten diese Schulungen standardisiert, strukturiert und wiederholt erfolgen, am besten gemeinsam mit Familienangehörigen/Freunden [4,7] sowie anderen Betroffenen, um einen Erfahrungsaustausch zu ermöglichen, der sich ebenso als günstig erwiesen hat [8].…”