Development of QoLTEN - a bespoke health-related quality of life outcome measure for adults with Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN): An international multidisciplinary DELPHI consensus survey.
Date
2025-10-30
Abstract
Background: The physical sequelae associated with survival from SJS/TEN are well known and include ocular, dermatological, genitourinary, and respiratory complications. However, there is less evidence demonstrating the psychological sequelae. These sequelae have long term impacts on the lives of those affected. Many adults with SJS/TEN develop quality of life disruptions such as fear of taking medication with the risk of reoccurrence, emotional challenges such as depression and anxiety, effects on self-image and self-esteem, and difficulties with re-engaging with their previous social lives, relationships and work/education
Objectives: The aim of the three round Delphi study was to gain consensus amongst an international expert panel in relation to the items for inclusion in QoLTEN: a bespoke QoL outcome measure for adults with SJS/TEN.
Methods: The development of QoLTEN was guided by the DeVellis two-phase instrument development framework. Item development was achieved through the completion of a mixed methods systematic review, a systematic umbrella review and an interpretive descriptive qualitative study. To reach a consensus on the initial QoLTEN items, a three round Delphi study, with a panel of 76 international experts, was completed.
Results: The twenty agreed items in QoLTEN reflect key areas that impact the lives of adults with SJS/TEN. Five items display the psychological impact that SJS/TEN may have on adults’ lives. Nine items, reflect the impact that SJS/TEN may have on an individual’s work/educational-life, social-life and personal relationships. Finally, six items in QoLTEN relate to the fear of taking medication with the risk of reoccurrence and the challenges that SJS/TEN adults face during their follow up care.
Conclusions: The development of QoLTEN is a practical step to meet SJS/TEN adult survivor’s needs and has the potential to improve care by assisting clinicians in the assessment and appropriate treatment plan of these individuals. QoLTEN should have additional uses to support evidence-based policy and practice. It is envisaged that this QoL outcome measure may also be used as a communication aid between clinicians and patients, during follow up care to monitor changes in QoL and provide appropriate care to allay distress.
This version of the dataset adds documentation on the phases involved in developing QoLTEN including the French translation process.
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Sustainable Development Goals
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http://creativecommons.org/licenses/by-nc-sa/4.0/