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Exploring perceptions of and decision-making about CFTR modulators.

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Cystic fibrosis transmembrane regulator (CFTR) modulator initiation requires thoughtful discussion, addressing patient emotions and knowledge gaps. Care teams should support all patients, including those ineligible for modulators.

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Area of Science:

  • Pulmonology
  • Medical Genetics
  • Patient Care

Background:

  • Cystic fibrosis (CF) treatment increasingly utilizes highly effective modulators.
  • Guidance for CF care teams on educating patients about modulator initiation is limited.
  • This study explored patient, caregiver, and clinician perspectives on CFTR modulators.

Purpose of the Study:

  • To explore patient, caregiver, and clinician perceptions of CFTR modulators.
  • To identify influences on decisions regarding starting CFTR modulator therapy.
  • To inform best practices for CF care teams in discussing modulator initiation.

Main Methods:

  • Conducted semistructured interviews with CF clinicians, adults with CF, and caregivers of children with CF.
  • Analyzed interview audio recordings by coding responses to identify central themes.
  • Included 8 CF clinicians, 9 adults with CF, and 11 caregivers in the study.

Main Results:

  • Key themes included emotional responses, decision-making influences, side effect concerns, and future planning related to modulators.
  • Clinicians noted shifts in prescribing conversations post-elexacaftor/tezacaftor/ivacaftor approval.
  • The multidisciplinary CF care team plays a crucial role in supporting treatment decisions.
  • Unique needs of patients ineligible for modulators were also identified.

Conclusions:

  • Clinicians should engage in thorough and thoughtful conversations about CFTR modulators.
  • Utilize the multidisciplinary care model to address patient/caregiver emotions and knowledge gaps.
  • Discuss treatment goals beyond clinical benefits and provide compassionate support for ineligible patients.