Since 2020, ETI (elexacaftor/tezacaftor/ivacaftor) has been used to treat patients with cystic fibrosis. Acne and rash are listed as “common” and “very common” adverse effects in the Summary of Product Characteristics for ETI, affecting between 2-5% and 10% of patients respectively. Patients have, however, shared their experience of developing acne and rashes with clinicians and on social media. This study aimed to describe the real-world impact of rash and acne amongst patients taking ETI and to evaluate the service provided by healthcare practitioners.

A paper and/or electronic survey was distributed to adult patients taking ETI in two regional CF centres between November 2022 and February 2023.

Of the 268 survey respondents, 20.9% reported new-onset acne and 13.8% reported a rash following the commencement of ETI. 11.9% had a past history of acne and reported an exacerbation/recurrence after starting ETI. ETI-associated acne occurred weeks to months after commencement of ETI, whereas most rashes occurred within the first 2 weeks of treatment. Reassuringly for 2/3 of affected patients, acne and rashes were minor side effects, although 1/3 experienced a greater impact on their quality of life.

This study is the first to specifically report the real-world prevalence of acne and rashes amongst patients taking ETI, which is higher than that reported in clinical trials. These findings could be used to improve counselling of patients commencing ETI. Ensuring access to up-to-date resources and treatments for patients experiencing skin side-effects would be mutually beneficial for both patients and healthcare professionals.