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Related Concept Videos

Cystic Fibrosis: Management01:24

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Cystic fibrosis (CF) is an autosomal recessive disorder that predominantly affects individuals of Northern European descent, occurring at a rate of 1 in 3500. It is caused by a genetic mutation in a gene on chromosome 7, most commonly the ΔF508 mutation, that codes for the cystic fibrosis transmembrane conductance regulator (CFTR) protein. This results in thicker mucus secretions and obstruction pathologies in multiple organs, including the lungs and sinuses.
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Cystic fibrosis (CF), an autosomal recessive disorder, significantly affects the function of exocrine glands. This genetically inherited disease is characterized by the production of thick and sticky mucus, which can severely affect various organs and systems in the body.
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Updated: Jun 18, 2025

Growing a Cystic Fibrosis-Relevant Polymicrobial Biofilm to Probe Community Phenotypes
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Interventions to improve system-level coproduction in the Cystic Fibrosis Learning Network.

Breck Gamel1, Dana Albon2, Srujana Bandla3

  • 1Children's Health Cystic Fibrosis Center, The University of Texas Southwestern Medical Center, Dallas, Texas, USA.

BMJ Open Quality
|July 27, 2024
PubMed
Summary
This summary is machine-generated.

Patient and family partners (PFPs) actively engaged in quality improvement (QI) initiatives within cystic fibrosis programs. System-level strategies enhanced coproduction perceptions and PFP satisfaction, showing potential for broader health applications.

Keywords:
community-based participatory researchhealthcare quality improvementpatient participationpatient-centred careteamwork

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Area of Science:

  • Healthcare Quality Improvement
  • Patient and Family Engagement
  • Health Systems Research

Background:

  • Coproduction, defined as equal patient-clinician collaboration, is vital for healthcare quality improvement (QI).
  • Learning Health Networks (LHNs) integrate coproduction into QI efforts across diverse health systems.
  • Patient and Family Partners (PFPs) are essential collaborators in healthcare delivery and improvement.

Purpose of the Study:

  • To describe interventions for developing and sustaining PFP coproduction in QI.
  • To measure PFP coproduction using PFP and program-reported scales.
  • To increase PFP involvement in QI while maintaining PFP-clinician relationship satisfaction.

Main Methods:

  • Co-created interventions with people with CF, caregivers, and clinicians within the Cystic Fibrosis Learning Network (CFLN).
  • Interventions focused on readiness, recruitment, onboarding, partnership development, and leadership opportunities.
  • Monthly assessments of PFP/program perceptions and PFP QI skills/satisfaction were analyzed using control and run charts.

Main Results:

  • The CFLN grew to 34 programs, with 52% having PFPs actively reporting QI participation.
  • Clinicians reported PFPs actively participating or leading QI in 76% of programs.
  • PFPs showed increased QI skills (17%-32%) and high satisfaction, feeling valued.

Conclusions:

  • System-level strategies effectively enhanced coproduction perceptions and PFP engagement in QI for CF programs.
  • Adaptable strategies included onboarding, QI training, multi-PFP support, and financial recognition.
  • These interventions show promise for fostering coproduction in other health conditions.