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Exploring the challenges of accessing medication for patients with cystic fibrosis
  1. Sophie Herbert1,
  2. Nicola Jane Rowbotham1,
  3. Sherie Smith1,
  4. Patrick Wilson2,
  5. Zoe C Elliott3,
  6. Paul A Leighton4,
  7. Alistair Duff5,6,
  8. Alan Robert Smyth1
  1. 1 Evidence Based Child Health Group, University of Nottingham School of Medicine, Nottingham, UK
  2. 2 Pharmacy Department, Nottingham University Hospitals NHS Trust, Nottingham, UK
  3. 3 Parent of Children with Cystic Fibrosis, Nottingham, UK
  4. 4 NIHR Research Design Service for the East Midlands, University of Nottingham, Nottingham, UK
  5. 5 Clinical and Health Psychology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  6. 6 Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  1. Correspondence to Dr Nicola Jane Rowbotham, Evidence Based Child Health Group, University of Nottingham School of Medicine, Nottingham NG7 2UH, UK; nicola.rowbotham{at}


Reducing treatment burden in cystic fibrosis (CF) is the top research priority for patients and clinicians. Difficulty accessing medication is one aspect of treatment burden. We investigated this with an online survey available globally for patients with CF and healthcare professionals. Almost three quarters of patients with CF in our survey report difficulty getting repeat prescriptions on time, and most community pharmacists experience interrupted supplies of CF-specific medications. These barriers affect emotional and physical health of people with CF. Two-thirds of people with CF would like to get all their CF medication from one place, their CF centre.

  • cystic fibrosis
  • psychology
  • respiratory infection

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  • Contributors SH, NJR, SS, ARS were involved in concept, design, data collection, analysis and preparing the final manuscript. PW and ZCE involved in the data collection, analysis and preparing the final manuscript, PAL involved in analysis and preparing the final manuscript. AD involved in preparing the final manuscript.

  • Funding This work was funded by the UK Cystic Fibrosis Trust, and the University of Nottingham. NJR was an NIHR Academic Clinical Fellow at University of Nottingham. ARS is part of the National Institute for Health Research Nottingham Biomedical Research Centre.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.