P323 Adherence to treatment in cystic fibrosis: the reliability of self-reported data

Russo, Antonio Dello; Lowndes, L.; McShane, D.

doi:10.1016/s1569-1993(20)30652-4

Cited by 1 publication

(1 citation statement)

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“…Clinicians can better counsel patients and caregivers if they know about patient understanding of and expectations for treatment with highly effective modulators. Interventions aimed to improve shared decision‐making by assessing and increasing knowledge can yield a greater likelihood of receiving care aligned with patient preferences 18,19 . With the goal of being able to inform approaches to conversations about CFTR modulators to meet the ever‐changing needs of people living with CF, we explored knowledge of and attitudes of adults with CF, caregivers of children with CF, and CF clinicians toward modulators as well as conversations about initiating modulators.…”

Section: Introductionmentioning

confidence: 99%

Exploring perceptions of and decision‐making about CFTR modulators

Landess,

Prieur,

Brown

et al. 2024

Pediatric Pulmonology

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IntroductionCystic fibrosis (CF) treatment has increasingly focused on highly effective modulators. Despite measurable benefits of modulators, there is little guidance for CF care team members on providing education and support to patients regarding initiation of these therapies. We aimed to explore patient, caregiver, and clinician perceptions of modulators and influences on decisions about starting cystic fibrosis transmembrane regulator (CFTR) modulators.MethodsWe conducted semistructured interviews with CF clinicians, adults with CF, and caregivers of children with CF. We reviewed audio recordings and coded responses to identify central themes.ResultsWe interviewed 8 CF clinicians, 9 adults with CF, and 11 caregivers of children with CF. Themes centered on emotional responses to modulator availability, influences on decision‐making, concerns about side effects, impact of modulators on planning for the future, the benefits of the multidisciplinary CF care team in supporting treatment decisions, and the unique needs of people with CF who are not eligible for modulators. Clinicians described changes in conversations about modulators since the approval of elexacaftor/tezacaftor/ivacaftor, specifically greater willingness to prescribe with less nuanced conversations with patients and/or caregivers regarding their use.ConclusionBased on perspectives and experiences of CF clinicians, adults with CF, and caregivers of children with CF, we suggest clinicians approach conversations about CFTR modulators thoughtfully and thoroughly, utilizing the multidisciplinary model of CF care in exploring patient and caregiver emotions while filling in knowledge gaps, asking about treatment goals beyond potential clinical benefit, and having compassionate conversations with those who are ineligible for modulators.

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Section: Introductionmentioning

confidence: 99%