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

BMC Endocrine Disorders

Research Article

L. M Shepherd¹  A. A Tahrani²  C Inman³  W Arlt⁴  D. M Carrick-Sen⁵ 

[1]Department of Diabetes & Endocrinology, Heart of England NHS Foundation Trust, Birmingham Heartlands Hospital, Bordesley Green East, B9 5SS, Birmingham, West Midlands, UK

[2]Institute of Metabolism & Systems Research, University of Birmingham, IBR Tower, Level 2, Edgbaston, B15 2TT, Birmingham, West Midlands, UK

[3]Department of Diabetes & Endocrinology, Heart of England NHS Foundation Trust, Birmingham Heartlands Hospital, Bordesley Green East, B9 5SS, Birmingham, West Midlands, UK

[4]Institute of Metabolism & Systems Research, University of Birmingham, IBR Tower, Level 2, Edgbaston, B15 2TT, Birmingham, West Midlands, UK

[5]Birmingham Health Partners, University of Birmingham & Centre for Endocrinology, Diabetes and Metabolism (CEDAM), B15 2TT, Birmingham, UK

[6]Department of Public Health & Community Health, Birmingham City University Faculty of Health, City South Campus, Westbourne Road, B15 3TN, Birmingham, UK

[7]Institute of Metabolism & Systems Research, University of Birmingham, IBR Tower, Level 2, Edgbaston, B15 2TT, Birmingham, West Midlands, UK

[8]Birmingham Health Partners, University of Birmingham & Centre for Endocrinology, Diabetes and Metabolism (CEDAM), B15 2TT, Birmingham, UK

[9]School of Nursing, Institute of Clinical Sciences, College of Medical & Dental Sciences, University of Birmingham, Edgbaston, B15 2TT, Birmingham, West Midlands, UK

[10]Heart of England NHS Foundation Trust, Birmingham Heartlands Hospital, Bordesley Green East, B9 5SS, Birmingham, UK

关键词: Addison’s disease;    Adrenal insufficiency;    Nursing;    Knowledge;    Adherence;    Hydrocortisone;    Acute illness;    Stressful event;   

DOI  :  10.1186/s12902-017-0196-0

 received in 2017-02-06, accepted in 2017-07-10,  发布年份 2017

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© The Author(s). 2017