Meaningful Criteria to Persons Living With Cystic Fibrosis and Their Healthcare Providers in Helping Determine Adjustments to Routine Clinical Follow-Up.

introductionPersons living with cystic fibrosis (PwCF) have experienced fewer exacerbations and symptom burden over the last decade, largely thanks to widespread uptake of highly effective modulator therapy (HEMT). With these advancements, there have been interest in the community regarding adjustments to the care model. However, there is a paucity of data with which to guide discussions for clinical follow-up.

objectiveThe goal of the survey is to better understand the components of clinical care that are perceived as important when PwCF and their healthcare providers are considering the timing of routine clinical evaluations.

methodsThe survey asked predominantly United States PwCF and healthcare providers via CF Community listservs which factors should be considered when determining the interval between routine clinic visits. These included pulmonary function, respiratory symptoms, use of HEMT, pulmonary exacerbations (PExs), and co-morbidities.

resultsThe survey was completed by 152 PwCF and 177 medical providers. Pediatric providers and PwCF were comfortable with higher baseline lung function in comparison to adult providers when considering visit extensions. PwCF and pediatric providers felt more frequent visits were required in comparison to adult providers. PwCF were more tolerant of prior PExs requiring IV antibiotics. There were no differences between groups with respect to the maximum number of PExs requiring oral antibiotics in the previous year to safely extend the interval between visits.

conclusionThe survey identified and quantified factors that PwCF, adult providers, and pediatric providers felt were important when considering adjusting the interval between clinic visits.