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Exploring perceptions of and decision-making about CFTR modulators.

Lee LandessMary G PrieurAshley R BrownElisabeth P Dellon
Published in: Pediatric pulmonology (2024)
Based 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.
Keyphrases
  • cystic fibrosis
  • palliative care
  • small molecule
  • healthcare
  • decision making
  • primary care
  • young adults
  • case report
  • mental health
  • advance care planning
  • pain management
  • risk assessment