Co-production of the 'My SJS Passport' to support survivors of Stevens-Johnson syndrome post-diagnosis and beyond: a proof-of-concept study.

Abstract

Background: Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are life-threatening reactions that cause blistering of the skin and mucous membranes. Survivors can experience long-term physical and psychological complications. The 'My SJS Passport' was co-produced by the Patient and Public Involvement group and research team at the Wolfson Centre for Personalised Medicine to improve the care and experiences of survivors.

Objectives: The aim of the study was to implement the 'My SJS Passport' in a real-world setting for evaluation by those with lived experience of SJS/TEN. The objectives were to assess participants' perceptions of its acceptability and utility when used during appointments with healthcare professionals and to explore perceptions of its value and potential barriers to implementation.

Methods: A proof-of-concept study to evaluate the acceptability and usability of the passport using a mixed-methods approach.

Results: A questionnaire was completed by 19 (86%) women and 3 (14%) men (patient, family member, guardian or carer), and 11 of 22 participated in focus groups. The findings suggest the passport is a valuable communication tool, as it acted as the 'patient's voice' and helped in validating the diagnosis with healthcare professionals, family and friends.

Conclusions: The study provides the first formal evaluation of the passport and showed that the tool is acceptable, functional and of benefit to the user. Minor barriers to implementation were identified, largely due to the COVID-19 pandemic and, to a lesser extent, the passport design. There is no comparable tool in use; thus, based on these preliminary findings, it is thought that the passport has a valuable role in supporting this underserved population.