Assessing the impact of adrenal insufficiency on health and well-being in adults living on the Island of Ireland

Summary

Addisons and adrenal insufficiency are rare life-threatening endocrine conditions where the adrenal glands cease to function so that the body no longer produces several essential steroid hormones (Conrad et al. 2023 and Martin-Grace et al. 2020).  In the UK, autoimmune Addison’s disease affects approximately 1 in 14,000 people (NICE, 2025).

***Some people with Addison’s (Primary) also have an Autoimmune Polyglandular Syndrome

Symptoms include overwhelming fatigue, dizziness, muscle weakness, nausea stomach pain, “brain fog” and in the case of Addison’s, in particular, low blood pressure and salt craving owing to sodium imbalance.

Treatment includes hydrocortisone to replace cortisol; Fludrocortisone to replace aldosterone (for Addison’s) and for some DHEA (not well tolerated). patients are at risk of “adrenal crisis”, due to a drop in cortisol, triggered by stressful situations (such as bereavement, trauma, surgery, infection or if unable to absorb oral cortisol owing to diarrhea or vomiting), or in hot climates owing to dehydration and loss of sodium in sweat (Sueoka et al., 2023).

This life-threatening situation requires immediate emergency treatment owing to extreme weakness, confusion, and dangerous drops in blood pressure, eventually resulting in coma if untreated. Patients always carry an emergency injection kit, but adrenal crises often involve hospital admission for intravenous hydrocortisone and fluid/sodium chloride (Camsosun & Sanguin, 2024; Lewis et al. 2023).

As these are rare conditions with non-specific symptoms, it can take years for diagnosis and these patients find themselves having to be “patient experts” with a chronic health condition, as most medical professionals that they encounter will never have had a patient with these conditions.

They are at risk of renal problems, other autoimmune conditions, difficulties with bone health in the long-term owing to long-term steroid usage (Bandeira et al 2025 and Stergianos et al. 2025).

There are risks with under/over medication as there is no easy way to monitor cortisol levels which can result in weight gain.

Anecdotal evidence indicates that patients seeking emergency care for adrenal crisis or undergoing surgery struggle owing to lack of knowledge of the management of their condition among health professionals. All these factors may impact quality of life and may also affect the patient’s employment.

This study will contribute to our understanding of this condition and how it is managed.  We will seek input from people who have adrenal insufficiency to inform the research process. This approach will ensure that what are doing is relevant and fit for purpose to inform further research in this area and provide the basis for a PhD proposal.

Aim & Objectives of the research

Overall aim: to establish the impact of adrenal insufficiency on health and well-being in adults living on the Island of Ireland

To determine the experiences of patients with Addison’s Disease and adrenal insufficiency on the Island of Ireland whilst undergoing surgery and when accessing emergency care for adrenal crisis.

To determine the impact of Addison’s Disease and adrenal insufficiency on quality of life, stress and coping associated with managing their condition.

To investigate the dietary and exercise advice given to patients with Addison’s Disease and adrenal insufficiency on the island of Ireland to preserve bone health in the face of life-long steroid treatment.

A patient support group is currently being established in Ireland. It is hoped that the data from this project will provide an evidence base to help this patient group to advocate for better knowledge amongst health professionals and improvements in their care.

Methods to be used

Design: a cross-sectional design will be employed. A small patient advisory group will be established to inform the research.

Participants: participants will be recruited from established support groups focusing on adrenal insufficiency and Addisons Disease.

Materials: A co-produced online JISC questionnaire will be developed to record socio-demoographic information (Sex, Age, SES), health and lifestyle factors (diet and exercise) (Simpson et al., 2005), history of the condition (duration, diagnosis, symptoms), assessment of psychiatric morbidity ( GHQ-12, Goldberg, 1972) quality of life (WHO-Brief QoL), stress (Perceived Sress Scale – 14 item, Cohen et al., 1983), coping (Brief COPE, Carver, 1997) and self – management practices (open ended questions will be developed).

The questionnaire will also be informed by the NICE guidance for the identification and management of Adrenal Insufficiency (NICE 20204) and the Society for Endocrinology and Addison’s Disease Self Help Group Consultation Reference Guide for adult patients with Addison’s Disease (which is also informed by the NICE guidance.

Participants will also be asked questions to assess the experiences of patients with regards to access to emergency care, steroid cover during surgical procedure and awareness of dietary and exercise advice to optimise bone heath in the face to lifelong steroid usage?

Procedure: Following ethical approval, a study invitation will be shared by the administration team for the support group, approval provided, The invite will include a brief overview of the study, and a link to the  participant information sheet, consent form and questionnaire to be completed.

Statistical analyses: data will be analysed using frequency, descriptive data analyses, and multivariate statistics. Open ended questions will be content and summative analysed using methods recommended by Joffe & Yardley (2004).

Skills required of applicant:

• An undergraduate degree in psychology or related discipline with a grade of 2:1 or above
• Ability to perform scientific literature searches
• Good communication skills
• Good report writing skills
• Ability to independently and as part of a team
• Experience of database development and SPSS
• Experience of setting up a questionnaire within JISC

Essential criteria

Applicants should hold, or expect to obtain, a First or Upper Second Class Honours Degree in a subject relevant to the proposed area of study.

We may also consider applications from those who hold equivalent qualifications, for example, a Lower Second Class Honours Degree plus a Master’s Degree with Distinction.

In exceptional circumstances, the University may consider a portfolio of evidence from applicants who have appropriate professional experience which is equivalent to the learning outcomes of an Honours degree in lieu of academic qualifications.

Equal Opportunities

The University is an equal opportunities employer and welcomes applicants from all sections of the community, particularly from those with disabilities.

Appointment will be made on merit.

Funding and eligibility

This opportunity is open to all applicants.

The tuition fee for international and EU (excluding ROI) candidates is £19,040 for 2026/27.

Studentship funding is available to UK and ROI applicants, as follows:

• MRes studentships will be available to top ranked candidates to cover tuition fees and a Research Training Support Grant of £900.
• All applicants to the project will be considered automatically for an MRes studentship.
• Applicants who do not receive a studentship but meet admission requirements may be offered admission on a self-funded basis.
• Applicants who already hold an MRes or a doctoral degree or who have been registered on a programme of research leading to the award of an MRes or doctoral degree are NOT eligible to apply for funding.
• Applicants who hold or who are registered on a taught Master’s degree are eligible to apply.