Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2025
"Time out for an hour, every day, my whole life": understanding treatment burden in cystic fibrosis in the era of Elexacaftor/Tezacaftor/Ivacaftor (ETI).
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод пока не подготовлен
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Butcher Jennifer L, Siracusa Christopher, Grabowski Hannah, Yablon Dana, Ertman Benjamin, McWilliams Emma, Woo Tia, Everhart Robin S, Maggs Jill, Prickett Michelle, Gifford Alex H, Mayer-Hamblett Nicole, Nichols David P, Riekert Kristin A, Sawicki Gregory S
Аннотация
BACKGROUND: Reducing treatment burden is a priority within the CF community. Improved outcomes for many people with CF (PWCF) following treatment with Elexacaftor/Tezacaftor/Ivacaftor (ETI) have led to considering whether daily CF regimens can be reduced. It is important to understand perceptions of PWCF when making decisions about care changes. We investigated how PWCF conceptualize treatment burden, including the types of burdens experienced, how burden has changed with ETI therapy, and how burden impacts treatment-related decision-making.
METHODS: The Qualitative Understanding of Experiences with the SIMPLIFY Trial (QUEST) study recruited PWCF aged 14+ prescribed ETI and caregivers of teenagers for interviews following completion of the SIMPLIFY treatment discontinuation trial. Two semi-structured interviews were conducted, recorded, and transcribed. Treatment burden language was identified, coded, and thematically analyzed without prior hypotheses.
RESULTS: 68 adults, 23 teenagers, and 23 caregivers participated in at least one interview. Treatment burden codes were identified and organized into 3 themes: 1) Defining Treatment Burden (time, organizational, social-emotional domains), 2) How Treatment Burden has Changed with ETI (increased, decreased), and 3) Strategies to Decrease Treatment Burden (combining treatments, skipping treatments, communicating with care team).
CONCLUSION: Definitions of CF treatment burden are expansive and personalized. Interventions to reduce treatment burden should be individualized without assuming burden is perceived, or how each individual views and manages burdens. Personalized definitions of treatment burden will allow for tailored assessment and intervention strategies that match the needs of the individual.
METHODS: The Qualitative Understanding of Experiences with the SIMPLIFY Trial (QUEST) study recruited PWCF aged 14+ prescribed ETI and caregivers of teenagers for interviews following completion of the SIMPLIFY treatment discontinuation trial. Two semi-structured interviews were conducted, recorded, and transcribed. Treatment burden language was identified, coded, and thematically analyzed without prior hypotheses.
RESULTS: 68 adults, 23 teenagers, and 23 caregivers participated in at least one interview. Treatment burden codes were identified and organized into 3 themes: 1) Defining Treatment Burden (time, organizational, social-emotional domains), 2) How Treatment Burden has Changed with ETI (increased, decreased), and 3) Strategies to Decrease Treatment Burden (combining treatments, skipping treatments, communicating with care team).
CONCLUSION: Definitions of CF treatment burden are expansive and personalized. Interventions to reduce treatment burden should be individualized without assuming burden is perceived, or how each individual views and manages burdens. Personalized definitions of treatment burden will allow for tailored assessment and intervention strategies that match the needs of the individual.