Survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) face numerous psychological and physiological challenges that significantly affect their quality of life. Many experience difficulties in returning to work and maintaining relationships. A substantial number, approximately 50%, remain hesitant to take medications even five years after their discharge. Feedback from patients, family caregivers, and clinicians indicates that current general quality of life (QoL) measures do not adequately reflect the unique experiences of SJS/TEN survivors.

To address this gap, our project aims to develop and test a specific QoL outcome measure tailored for individuals affected by SJS/TEN, which we have named QoLTEN. We have created a draft version of this measure and would like to invite you to participate in a two-round survey designed to evaluate how effectively QoLTEN captures your quality-of-life experiences. Your input will be invaluable in refining this tool to better serve the needs of SJS/TEN survivors.

This study is led by Professor Pauline O’Reilly from the Department of Nursing & Midwifery at the University of Limerick. The research team also includes Professors Sarah Walsh, Saskia Ingen Housz-Oro, Chris Bunker, Roni Dodiuk-Gad, Donal Fortune, Ailish Hannigan, and Ms. Sheila Ryan. Together, they are dedicated to advancing our understanding of quality of life for survivors of SJS/TEN.

We are inviting adults who had SJS/TEN to take part in the two round online survey.

Participants will be invited to take part in a two-round survey, with each round taking approximately 20 minutes to complete. The survey will be conducted online using GDPR-compliant software (Qualtrics). If you consent to participate, you will receive a link to the first survey, which will include the QoLTEN measure along with some additional questionnaires, including a brief demographic survey and two other quality of life assessments.

Two weeks later, you will receive another link to repeat the process, allowing us to incorporate any feedback you provided into QoLTEN. The insights gathered from this study will be instrumental in finalizing the development of the QoLTEN measure. If you choose to participate, your name will be entered into a draw for a voucher or gift as a token of appreciation.

We hope that QoLTEN will provide significant benefits to patients diagnosed with SJS or TEN in the future. This initiative represents a practical step towards addressing the unique needs of SJS/TEN patients and has the potential to enhance care by aiding clinicians in assessing their condition and developing appropriate treatment plans. Furthermore, QoLTEN aims to facilitate communication between clinicians and patients, enabling more meaningful discussions about how the condition impacts their lives.

There are no known risks associated with this research project. Participation in this study is entirely voluntary. If at any point you decide that you no longer wish to participate, you are free to withdraw without any consequences. Your decision to stop participating will be respected, and there will be no negative repercussions for changing your mind.

The Data Controllers for this study are the University of Limerick, Plassey, Limerick. All information collected from the survey will be kept confidential, with password protection applied to each file on the university’s computer systems. The Principal Investigator will securely store all data, including consent forms. Participants will not have their names attached to any published information; instead, they will be assigned a study ID code.

Once the study is completed, all data will be retained for seven years in accordance with the Data Protection Act (2018) and will then be securely erased from electronic sources, including audio files, with any hard copies being shredded.

The University of Limerick will not disclose your personal data to any third parties. For more information on Data Protection at the University, please visit www.ul.ie/dataprotection. You can also reach out to the Data Protection Officer at dataprotection@ul.ie or by writing to the Data Protection Officer, Room A1-073, University of Limerick, Limerick.

The data collected from the surveys will be analyzed and compiled by Professor Pauline O’Reilly and the research team. The primary aim of the surveys is to assess how effectively QoLTEN measures your quality-of-life experiences. The findings from this research will be submitted for publication in a peer-reviewed journal. Rest assured, the names of research participants and any identifying details will not be included in any publications.