A Joint Conversation: People With Cystic Fibrosis' Perception of Healthcare Teams' Knowledge, Comfort, and Barriers in Discussing Substance Use

Sanaz Vaziri; Meghan E McGarry; Addison A Cuneo; Shaina M Willen; Kensho Iwanaga; Fatima Neemuchwala; Elizabeth R Gibb; Marilynn Chan; Ngoc P Ly

doi:10.1002/ppul.71017

A Joint Conversation: People With Cystic Fibrosis' Perception of Healthcare Teams' Knowledge, Comfort, and Barriers in Discussing Substance Use

Pediatr Pulmonol. 2025 Mar;60(3):e71017. doi: 10.1002/ppul.71017.

Authors

Sanaz Vaziri¹, Meghan E McGarry², Addison A Cuneo¹, Shaina M Willen³, Kensho Iwanaga¹, Fatima Neemuchwala¹, Elizabeth R Gibb¹, Marilynn Chan⁴, Ngoc P Ly¹

Affiliations

¹ Department of Pediatrics, University of California San Francisco, San Francisco, USA.
² Department of Pediatrics, University of Washington, Seattle, USA.
³ Department of Pediatrics, University of California Davis, Sacramento, USA.
⁴ Department of Pediatrics, Kaiser Permanente, Bellflower, USA.

PMID: 40019020
DOI: 10.1002/ppul.71017

Abstract

Background: Substance use has increased among people with CF (pwCF), yet communication about use remains understudied between pwCF and their healthcare providers.

Objective: Investigate pwCF's perceptions regarding their healthcare team's discussions surrounding substance use, comfort level discussing such usage, and barriers encountered during these discussions.

Methods: This cross-sectional study used a one-time electronic survey to assess communication regarding substance use between pwCF aged 13 years and older and their CF healthcare team.

Results: Of 226 participants, 74% (n = 167) reported being asked about marijuana, 57% (n = 128) about CBD, 70% (n = 150) about e-cigarettes, and 88% (n = 189) about cigarettes by their CF healthcare team. Fewer providers discussed the risks and benefits of each substance: 47% (n = 107) for marijuana, 40% (n = 90) for CBD, 44% (n = 99) for e-cigarettes, and 61% (n = 138) for cigarettes. Provider knowledge was rated higher for cigarettes and e-cigarettes compared to marijuana and CBD. Most participants felt comfortable discussing substance use, though a minority expressed discomfort, mainly due to concerns about documentation in medical records and perceived lack of support.

Conclusion: This study highlights variability in communication between pwCF and their healthcare teams regarding substance use, particularly when it comes to marijuana and CBD. The findings suggest a need for standardized guidelines and educational resources to improve recreational substance screening and discussion in CF clinical care, especially given the changing landscape of marijuana regulations and increasing use among pwCF.

Keywords: cbd; cystic fibrosis; marijuana; substance use; vaping.

MeSH terms

Adolescent
Adult
Communication*
Cross-Sectional Studies
Cystic Fibrosis* / complications
Cystic Fibrosis* / psychology
Electronic Nicotine Delivery Systems
Female
Health Knowledge, Attitudes, Practice*
Humans
Male
Middle Aged
Patient Care Team*
Perception
Substance-Related Disorders*
Surveys and Questionnaires
Young Adult

Grants and funding

Dr. Vaziri is supported by CFF First and Second Year Clinical Fellowship Grant (VAZIRI20B0) and Health Resources & Services Administration (HRSA-20-040-172184); Dr. McGarry is supported by the NHLBI (1K23HL133437-01A1) and Cystic Fibrosis Foundation Therapeutics (MCGARR16A0, 005294Y5123). Dr. Iwanaga is supported by Health Resources & Services Administration (HRSA-20-040-172184); Dr. Huang is supported by Cystic Fibrosis Foundation (003789Y7122). Dr. Ly is supported by Cystic Fibrosis Foundation (003789Y7122, 000410CC323): Cystic Fibrosis Foundation Therapeutics (003007Y121); Health Resources & Services Administration (HRSA-20-040-172184); Funding sources had no involvement.