Exploring the challenges of accessing medication for patients with cystic fibrosis

Abstract

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.

Airway clearance and exercise for people with cystic fibrosis: Balancing longevity with life

“…While burden of disease is well described, the burden of treatment is a less explored concept. Burden of treatment may be defined as, “the workload of healthcare and its effect on patient functioning and wellbeing.” 20 Taking medication is an aspect of treatment burden that is more visible to healthcare providers but the true burden and workload may include planning and attending health appointments, arranging and collecting prescriptions from multiple sources, setting up and taking medication, 31 maintaining equipment for medication taking (e.g., nebulizer), monitoring health (e.g., measuring lung function or glucose monitoring), setting up and carrying out nonmedication‐related treatment (e.g., exercise and airway clearance) and lifestyle changes (e.g., dietary changes) 32 . The cumulative treatment workload for patients with chronic conditions, when enacting all recommendations in disease‐specific guidelines, can be overwhelming 33,34 …”