We are delighted to award Dr Sofia Llahana's research study our Alfred Potter Memorial Medical Research Award. This annual award is to support medical research projects that will advance good clinical practice in the management of Addison’s disease and adrenal insufficiency.

Dr Sofia's research study aims to measure barriers and enablers to self-management for patients with adrenal insufficiency and to explore current patient education and care services, and whether these were affected or adapted in response to the COVID-19 pandemic. She shines a light on the vital need for patient education and care services that support self-management.

Participants’ recruitment for this research study has begun, so please read on to meet Sofia, find out more about this important research study and how you can take part.

Research Facts:

• Disease: Primary or Secondary Adrenal Insufficiency (AI) caused by Addison’s disease, CAH, pituitary conditions and other causes.
• Lead applicant: Dr Sofia Llahana
• Organisation: City, University of London and University College London Hospitals NHS Foundation Trust
• Type of grant: Alfred Potter Memorial Medical Research Award 2020
• Status of grant: Paid - research underway
• Amount of the original award: £10,000
• Start date: September 2021

 

What are the aims of this research?

The primary aim of this research is to describe patient education and care services available for patients with adrenal insufficiency in the UK, Europe, USA and Australia and to identify the factors (barriers and enablers) that affect patients’ ability to self-manage their treatment and condition. Findings of this study will inform the development of an international Position Statement on the standards for patient education and care services to support self-management for patients with AI, their families and healthcare professionals.

Why is this research important?

Patients with adrenal insufficiency need lifelong treatment with steroids, known as “glucocorticoid replacement therapy”. These patients can be at risk of adrenal crisis which is a life-threatening complication triggered mainly by infections, injuries or extreme levels of stress, and must have an injection of hydrocortisone immediately to prevent hospitalisation and death.

Many studies found that patients face a number of barriers to self-managing their condition and treatment and their ability to prevent and treat adrenal crisis.

"Education is a cornerstone in supporting patients’ self-management and has been recommended by all published expert reviews and clinical guidelines."

Small-scale research studies have also provided evidence on the need for patient education but these come from isolated specialist endocrine centres. There is therefore a need for studies that involve a wider geographical participation of patients to identify unmet needs and potential inequalities in care service provision. Moreover, although patient education is seen as vital, there are no agreed evidence-based standards and approaches for patient education and care services that support self-management.

 

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

This will be the first theory and evidence-based study to assess the self-management parameters for patients with AI and to make recommendations for the development of an international consensus on patient education and support services for patients with AI, their families and healthcare professionals. The study will also provide evidence to inform future research in the development of theory-based self-management interventions. Moreover, it will raise awareness of the key role that patient advocacy groups play in education and peer support for patients with AI and their families. 

"Findings will guide the development of internationally agreed standards for patient education and care services for patients, their families and healthcare professionals, and will inform future research in supporting patients to self-manage their condition."

 

What are your timelines on the project?

Participants’ recruitment for the study will be done in a staged approach between September 2021 and June 2022, commencing in the UK in 2021 with patient members from Patient Advocacy Groups (ADSHG and The Pituitary Foundation), followed by patients recruited from NHS endocrine centres in England and Wales. Recruitment will then continue outside the UK from early 2022. The study has been approved by the Research Ethics Committee at City, University of London and the Health Research Authority NHS Research Ethics Committee. 

To take part in the Research Study, click to visit the study website

 

“Meet the Researcher” 

Congratulations and welcome Dr Sofia Llahana! Can you tell us more about what your research project means for people with Addison’s disease and adrenal insufficiency?

Many studies have found that patients face a number of barriers to self-managing their condition and treatment and their ability to prevent and treat adrenal crisis. Education is vital in supporting patients’ self-management but there are no agreed standard for patient education and care services that support self-management.

Our research study aims to measure barriers and enablers to self-management for patients with AI and to explore current patient education and care services, and whether these were affected or adapted in response to the COVID-19 pandemic.

The study will be undertaken in 2 stages and will recruit participants from patient advocacy groups in the UK, Europe, USA and Australia. In stage 1 patients with AI and family members will be invited to group discussions to obtain in-depth understanding of the factors that influence the patient’s ability to manage their treatment and condition which will help the researcher to develop a robust questionnaire to be used in stage 2: an online questionnaire survey with patients with AI to measure barriers and enablers to self-management and current patient education and care service provision. Following this, a qualitative study using Delphi methodology will involve clinicians, patients and key stakeholders to develop an evidence-based position statement on patient education and standards of service provision for patients with adrenal insufficiency.

What inspires you and your passion for working to provide better treatments for people living with rare health conditions?

I have been an endocrine nurse since 2004 and have supported patients to better understand and manage their condition and treatment. I'm a strong advocate of and promote patient engagement and shared decision making through my ethos of “the expert patient guides the less knowledgeable clinician” especially for situations when patients are looked after by non-specialist healthcare professionals.

I've been working closely with patients with adrenal insufficiency in clinic but also with the ADSHG, the Pituitary Foundation and other patient advocacy groups in the UK and internationally to develop research studies that are grounded in clinical practice and address unmet patient needs. I work closely with my Research Team at City, University of London and other collaborators in the UK and internationally combining multidisciplinary and interprofessional expertise necessary to conduct large complex studies such as the current one.

Tell us a bit about your background and research?

I have just started a 3-year post-doctoral fellowship awarded by the National Institute for Health Research to work on my research portfolio three days/week. I am also a Senior Lecturer in Advanced Clinical Practice at City, University of London and a Consultant Nurse in Endocrinology at University College Hospital in London. I have the privilege of doing a role that combines research, teaching and clinical work. I'm the Lead Editor of the Advanced Practice in Endocrinology Nursing (Llahana et al. 2019), which is a comprehensive and currently the only available textbook for endocrine nurses with almost 80,000 downloads and includes 69 chapters written by a multidisciplinary team of 118 eminent authors across the globe.

 

I was honoured to be awarded the Special Recognition Award by the European Society of Endocrinology for contribution to nursing across the globe. This is one of the most prestigious international awards in Endocrinology and I'm the first nurse to have received this award. I'm the past Chair of the Nurses Committee and member of the Executive Committee of the European Society of Endocrinology (ESE), a current member of the Society for Endocrinology Nurse Committee in the UK and Board member of the Federation of International Nurses in Endocrinology (FINE). I enjoy being a member of the Medical Committee of The Pituitary Foundation and hold affiliations with several learned societies and patient advocacy groups in Endocrinology in the UK and internationally.

Tell us a bit about your background and research?

I have a research interest in pituitary and adrenal disorders, with a special focus on management of adrenal insufficiency, reproductive endocrinology, men’s health, self-management, adherence to medication and behavioural medicine, with a wide portfolio of peer-reviewed publications and conference presentations. My current research portfolio includes ongoing and new investigator-led and collaborative national and European studies in adrenal insufficiency, hypopituitarism, quality of life in men with Kilenefelter’s Syndrome, male fertility, and growth hormone deficiency in adults.

 

What are your plans for the future?

The current study is an ambitious project requiring a strong collaborative network of clinicians and patient advocacy groups. Findings of this study will inform the development of a Position Statement using a Delphi methodology study on standards for patient education and care services to support self-management for patients with adrenal insufficiency. The Delphi study, supported and funded by the Alfred Potter Memorial Medical Research Award from the ADSHG, is anticipated to run between December 2021 and June 2022, finding of which will be presented at the annual ADSHG conference, the European Congress of Endocrinology and will be submitted for publication at the European Journal on Endocrinology.

The findings of this study will also inform the development of a theory-based self-management behaviour change programme for patients with adrenal insufficiency conducted in partnership with ADSHG and The Pituitary Foundation and funded by the recently awarded NIHR post-doctoral research fellowship.

 

Do you have any advice that you would give to other researchers?

Read, read, and read more to identify gaps in knowledge, talk to colleagues and patients to explore and discuss research ideas and approach mentors and experts who can support you with designing the study.

Remember that that planning a research study often takes much longer than actually conducting the study, so persevere and seek support. Involve patients in formulating your research questions and designing your study right from the moment you have a research idea and counsel them throughout, including dissemination. We do research for the benefit of the patient after all, and no one is best placed to advise you on this then patients themselves.

"The most important thing to remember is that one can never do research in isolation and combined expertise, patient and public involvement and mentorship are crucial ingredients for success."

For clinicians starting out on their research endeavours, my advice is to reach out to experienced researchers and mentors for help. I would consider it a privilege to support colleagues to develop their research competence as my mentors have supported me throughout my career.

Where can we find out more information about you? 

Dr Sofia Llahana - Linkedin - Twitter - Research Study

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