Behind the Research: factors influencing self-management of adrenal crisis

We're delighted to share the findings of research supported by ADSHG members! Back in May 2023, we invited you to volunteer to take part in a study led by Aldons Chua, Endocrine Clinical Nurse Specialist, focusing on improving adrenal insufficiency and adrenal crisis management.

The aim of the study was to explore the experiences of people with adrenal insufficiency in managing adrenal crisis - to identify any unmet needs, inequalities, barriers, and facilitators in using the current hydrocortisone injection, whether at home or in community settings. All to identify what helps or interferes with your ability to use the injection to manage an adrenal crisis.

Now that this vital research has been published, we speak with Aldons Chua to find out more about his work, what this means for those living with Addison's and adrenal insufficiency and his passion for improving patients' well-being.


Research Facts

Why is this research important?

Various tools and resources are available to support patients with adrenal insufficiency, especially in self-managing adrenal crises. These include the NHS steroid card and NICE guidelines. However, despite these advancements, patients still face challenges in effectively self-managing or managing adrenal crises. Patients in clinics expressed mixed opinions, with some concerns about the complexity of preparing and self-administering hydrocortisone injections, the lengthy waiting times in emergency departments during crises, and praise for paramedic efficiency.

This research is crucial in providing further insight into the strategies that effectively assist patients in managing adrenal crises. It helps us understand which strategies have proven beneficial and which have not.

How will findings benefit people with Addison’s disease and adrenal insufficiency?

Our findings highlight the complex nature of managing this condition and the support needed from multiple agencies, including knowledgeable healthcare professionals, comprehensive patient education and the timely administration of parenteral hydrocortisone in home or community settings.

However, being aware of the symptoms that trigger adrenal crisis is crucial to effectively manage the situation. While the majority experience vague symptoms, understanding your baseline and knowing how your body reacts to stress allows you to respond appropriately. In addition, while simplified tools are essential, self-awareness and structured education remain paramount for effective self-management during an adrenal crisis.

This study adds evidence to further improve current strategies for supporting patients to self-manage adrenal crises.

Project history: how has the project developed?

This project has come a long way since it started in 2019, after hearing testimonies from our patients in clinic on the challenges they face during an adrenal crisis. This is despite the tools and training we provide. The most common concern was the complexity of the current injection device.

However, there were also patients who found it less challenging. I then started to question, “is it just the device or there is something else?” 

At a conference in Lyon, France in 2019, I met my amazing supervisor and raised the question. To my delight, we shared the same interest as her main research interest was also patient self-management in adrenal insufficiency. Together we developed it into a research project and submitted a proposal for an Endocrine Research Nurse Grant from the British Society for Endocrinology. After a few revisions, we were successfully awarded the grant in 2021.

I continued working as the lead researcher on the project and in 2022 incorporated it as part of my dissertation for my Master’s Degree in research at City, University of London. And finally, we have successfully published the final manuscript this year!

What’s next for the research, and how can we support?

Moving forward, we will need to conduct further studies on effective self-management strategies. This includes supporting the development of a simplified injection device and a more structured, evidence-based education for both patients and healthcare professionals.

Myself and the team, led by Dr Sofia Llahana, are collaborating with the ADSHG on a new study exploring how adrenal crises are managed in emergency settings, including at home, in ambulances, and in A&E. The research will involve people with adrenal insufficiency and emergency care professionals, aiming to understand what helps or delays giving hydrocortisone injections in a timely manner. The study is expected to begin later in Autumn 2025, and the ADSHG will share updates on how to get involved. 

Meet the Researcher - Aldons Chua

I'm a clinical nurse specialist at St Bartholomew’s Hospital, London - BART’s Health NHS Trust and Honorary Research Fellow at City, University of London, where I conducted this research project. I'm passionate about helping patients with endocrine disorders, working closely with them each day in clinic to improve their well-being. I'm also an active member of the British Society for Endocrinology and currently holds a position as a Nurse Committee Member for the European Society for Endocrinology.

I've been delighted to have met many ADSHG members at the London event in 2024 where I led injection training, and also the Addison’s Disease Day Awareness stand from May 2025 at St Barts Hospital. You can also catch me on the Addison's Disease Day Sick Day Webinar available on the ADSHG YouTube channel.

Tell us a bit about your own background

I'm originally from a humble village in Negros Island, Philippines. I completed my degree in nursing at Trinity University of Asia - St. Luke’s College of Nursing (Quezon City, Philippines) in 2011. I then started working as an endoscopy nurse at St Luke’s Medical Centre, Philippines in 2012. A year later, I was appointed as a liver transplant nurse/coordinator, supporting the pioneering work of liver transplantation in the Philippines.

I moved to the United Kingdom in 2016 with a suitcase full of big dreams. I started working as an acute care nurse at East Sussex Healthcare NHS Trust and then took on the role of an endocrine specialist nurse a year and a half later. Following my non-medical prescribing course, I pursued my master’s degree in clinical research at City, University of London which I completed in 2023. Last year I joined the Pituitary Foundation as their endocrine nurse and recently started working with the research team for Conn’s syndrome at the Queen Mary University, London, as well as continuing to support multiple ADSHG events.

What are your work highlights to date?

This publication is my career highlight to date. Working closely with my supervisor and mentor also opened doors to more projects in the topic area and allowed me to meet other experts in the field. I’ve also been part of the nurse committee for the European Society for Endocrinology and involved in clinical trial research at Barts.

What are your plans for the future?

I am determined to pursue the clinical academic pathway in nursing. I am planning to soon embark on a doctorate fellowship to further enhance my research skills and lead more research studies on adrenal diseases.

What advice would you give to healthcare professionals looking to undertake research or put support in place for patients? 

I totally understand how it feels at first, especially when you’re an immigrant like me and English isn’t your first language. I was very hesitant, because I didn’t know where to start or how even to begin. Research is not my expertise, and I was terrified of letting people down. I kept thinking, “What if I mess up?”

But here’s my advice: find a mentor who can guide you through the research world. Once you’re on board, you’ll realise it’s not as scary as you imagined. Attending conferences and nurse meetings was a great way to learn and network with experts in the field. Also, get involved in research, it may be data collection or recruiting patients to get an idea of what it's like conducting a research study. Of course, it takes a lot of commitment, perseverance, and time management, but it’s so worth it when you see your work published. It’s a huge sense of accomplishment!

Thank you for the vital work you do! Is there anything else you would like to say?

I would like to take a moment to express my deepest gratitude to everyone who’s been a part of this incredible journey. From the amazing patients at ADSHG and The Pituitary Foundation, who shared their incredible stories, to the funding from the British Society for Endocrinology, which provided the research nurse grant and the Barts Charity, which supported my MRes at City, University of London. And to my research/clinical supervisors, Dr Sofia Llahana, and Professor William Drake, who have always believed in me and to our co-authors, for their unwavering support and expertise. And of course, to my friends and family, who have been my rock, especially in times when I felt like giving up.

Hear more from Aldons

Here at the ADSHG we're so grateful to Aldons for his incredible support of the charity, our work and his research to improve the lives of those affected by Addison's and adrenal insufficiency. Thank you Aldons! Click the links below to hear more from Aldons and updates on his work through his social media, watch him lead our Sick Day Rules Webinar, and read his exciting new research!

Aldons Chua

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Sick Day Rules Webinar

Research


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