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Assessing Shared Decision-Making in Cystic Fibrosis Care Using collaboRATE: A Cross-Sectional Study of 159 Programs.

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Most cystic fibrosis (CF) patients experience shared decision-making (SDM) in their care. However, experiences vary by age and health, indicating a need for tailored interventions to improve SDM for all patients.

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Area of Science:

  • Medical research
  • Patient care
  • Health outcomes

Background:

  • Shared decision-making (SDM) is crucial in healthcare, yet patient experiences in cystic fibrosis (CF) care are not well understood.
  • Opportunities for SDM exist in CF care, but empirical data on patient-reported experiences are limited.

Purpose of the Study:

  • To evaluate the prevalence and patient-reported experiences of SDM in a large cohort of individuals with CF in the United States.
  • To identify factors associated with SDM experiences across different age groups and CF care settings.

Main Methods:

  • Utilized the patient-reported CollaboRATE measure within the CF Foundation's Patient and Family Experience of Care Survey.
  • Collected data from 4024 participants across 159 CF care programs over 18 months.
  • Employed multivariable logistic regression to analyze associations between SDM and patient demographics, age, and health status.

Main Results:

  • Overall, 69% of participants reported experiencing SDM.
  • Pediatric patients were more likely to report SDM than adult patients (72% vs. 67%).
  • SDM was less likely in patients aged 18-24 years and more likely in those with better general and mental health, particularly in pediatric settings.

Conclusions:

  • Significant disparities exist in SDM experiences among patients with CF.
  • Interventions should be developed to enhance SDM, especially for specific patient populations like young adults.
  • Improving SDM processes is essential for optimizing patient care and outcomes in CF.