More than skin deep

How and why we developed a quality‑of‑life outcome measure for people with Stevens Johnson Syndrome and Toxic Epidermal Necrolysis

Stevens Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are devastating dermatological conditions that typically occur as a reaction to medication. They exist on the same continuum, with TEN being the more severe form.

This event will explore the development of a bespoke quality-of-life (QoL) outcome measure for adults with SJS/ TEN.

Patients initially present with a febrile illness followed by necrosis and detachment of the skin and mucous membranes. Given this severity, SJS/ TEN cases are treated as medical emergencies, with care prioritising the maintenance of life. While the physical complications of SJS/ TEN are well documented, the psychological complications have received far less attention.

Survivors often experience long-term quality-of-life disruptions, including fear of medication due to the risk of recurrence, emotional challenges, and difficulties re-engaging with their previous lives.

Prior to our research, little was known about appropriate QoL outcome measures capable of capturing the specific, nuanced experiences of SJS/ TEN survivors. With funding from the Health Research Board, our research group developed such a measure and we named it QoLTEN.

This event may be recorded for future promotional use by University of Limerick.

All venues are wheelchair accessible but should you have any specific accessibility queries, please contact us at: research@ul.ie

Speakers

Professor Pauline O’Reilly, PhD; MA (Ed); BSc (Nursing); Diploma in Professional Studies; Cert CBT; RNID; RGN

Pauline O’Reilly is a Professor in the School of Nursing & Midwifery, University of Limerick, Ireland. She was Head of School for over five years. Within her career she has been involved in clinical nursing practice, management, research, and lecturing. Professor O’Reilly teaches across a range of programmes, with a particular focus on research and research methodologies. She has been nominated five times for an excellence in teaching award.

In 2021, she successfully led a Health Research Board application to develop an innovative SJS/ TEN quality-of-life (QoL) outcome measure (QoLTEN) to assess the nuanced QoL experiences of these patients. The research team comprises national and international clinicians, researchers and patients. The development of QoLTEN should be hugely important for SJS/ TEN patients and should make a notable contribution to their care.

Dr Sarah Walsh MB BCh BAO BMedSci MRCP, Consultant Dermatologist, King’s College Hospital NHS Foundation Trust, London

Sarah is a consultant dermatologist at King’s College Hospital in London, where her principal clinical and research interests are in the domain of acute medical dermatology, severe cutaneous adverse reactions (SCAR) to medicines, sarcoidosis, and biological therapies for psoriasis. She previously served as a Section Editor of the British Journal of Dermatology from 2011 – 2018 and is currently an Associate Editor of the Journal of the European Academy of Dermatovenereology (JEADV).

She is a member of the Advocacy Task Force of the EADV which comprises five specialists in dermatology active within the European Parliament, advocating for skin health for patients across Europe and has authored several book chapters on the topic of SCAR, including for the Rook Textbook of Dermatology, of which she is also an Associate Editor.

Sarah is the UK representative on the Board of the European Academy of Dermatovenereology. She is a member of the EADV Advocacy Working Group and also chair of the EADV training course in Visual Literacy while organising and chairing the Dermatology section of a successful multidisciplinary meeting in Val d’Isere each year, Doctors Updates.

Sheila Ryan - RANP Dermatology; MSc; BNS; RANP; RNP; RGN

Sheila Ryan is a Registered Advanced Nurse Practitioner in Dermatology at University Hospital Limerick and the first Registered Advanced Nurse Practitioner in Dermatology in Ireland.

She has over 33 years of clinical experience in dermatology practice across the United Kingdom and Ireland. She completed her general nurse training at the Limerick School of Nursing in 1992, obtained a bachelor’s degree in nursing from Trinity College Dublin in 2000, and completed a master’s degree at University College Dublin in 2006. She also holds a postgraduate qualification in Dermatology from King’s College London (1995) and completed Nurse Prescribing at the Royal College of Surgeons in 2007.

Sheila is currently undertaking a PhD at University of Limerick. Her doctoral research focuses on the psychological nursing care of patients with Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). She is a member of the research team led by Professor Pauline O’Reilly, examining the psychological impact of SJS and TEN.

Philomena Morrissey – QoLTEN Patient Public member

Phil has worked for a number of years with Pauline O'Reilly and Sheila Ryan on the preliminary research work on SJS/ TEN prior to the commencement of the QoLTEN project. She has contributed greatly to the project by articulating the needs and quality of life issues for individuals with SIS/ TEN. Phil was involved in the development of the research question for the research project.

As part of the research team, Phil worked closely with Pauline and was a member of the QoLTEN Project Steering Group, where provided guidance and helped to ensure that the proposed research was undertaken in a timely manner.

Robert Ahearne – QoLTEN Patient Public member

Robert has worked on different SJS/ TEN research projects with Pauline O’Reilly and Sheila Ryan over the last number of years. He has been involved in the QoLTEN project from the beginning and was central in the development of the research question. Robert is a valuable member of the QoLTEN Project Steering Committee, and his input provides guidance from a PPI perspective.

Professor Pauline Meskell (PhD, MA, MSc, BSc, RGN) is Professor of Research in the School of Nursing & Midwifery, University of Limerick

Pauline’s teaching interests are in all aspects of nursing, particularly acute and chronic care, advanced physical assessment and research. She has extensive experience of teaching across undergraduate and postgraduate programmes and has programme management and curriculum development expertise at undergraduate and postgraduate levels and was head of School from 2021 - January 2026.

Pauline's research interests and activity is in the areas of self-management of chronic diseases including renal disease, ageing, dementia, outcome measurement, and evidence synthesis. Pauline has particular methodological expertise around evidence synthesis conventional and policy Delphi, instrument development, and outcome measurement. She is a faculty member of Evidence Synthesis Ireland/Cochrane Ireland and co-lead of the QES stream. She delivers evidence synthesis workshops for Evidence Synthesis Ireland.