- •Being deemed not eligible for ETI shapes PwCF experiences and future expectations.
- •Disappointment was reported by all participants and appears to play a pivotal role in their experience.
- •Participants disclose mixed emotions: concerns for their health and happiness to see other people thrive.
- •Psychosocial support for PwCF not eligible for ETI should be a central aspect of care.
Elexacaftor-tezacaftor-ivacaftor (ETI) represents a significant step forward in cystic fibrosis (CF) care and could change the course of CF lung disease and quality of life for many people with CF (PwCF). However, several PwCF cannot benefit from these modulators because their rare mutations are not eligible for treatment. This study aimed to investigate the lived experiences of PwCF who are not eligible for ETI.
Data were collected through semi-structured interviews with 13 individuals with CF that were not eligible for ETI. Thematic analysis was used to identify the key themes of their experiences.
Two main themes and six subthemes were identified. The first main theme (being deemed ineligible for ETI) had four subthemes (disappointment, information, happiness, and concerns). The second main theme (coping with a life without ETI) had two subthemes (lack of hope and continued hope).
PwCF who are not eligible for ETI experience intense disappointment and conflicting emotions that can influence their decision-making linked to diminishing/renewal hope. Integrated care, including mental health monitoring programs, should be provided to these patients to aid them in overcoming their disappointment and to improve their coping.
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Published online: December 20, 2022
Accepted: December 16, 2022
Received in revised form: December 15, 2022
Received: August 22, 2022
Publication stageIn Press Corrected Proof
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