Lost in translation? How adults living with Cystic Fibrosis understand treatment recommendations from their healthcare providers, and the impact on adherence to therapy

Abstract

ObjectiveThis study builds on the limited research documenting Cystic Fibrosis (CF) patients’ understanding of treatment recommendations and how this may impact adherence to therapy. MethodsWe surveyed adults with CF and their healthcare professional (HCP) to capture treatment recommendations provided by the HCP, and patients’ knowledge, and frequency of performance, of these recommendations. We classified CF participants’ understanding of treatment recommendations (correct/incorrect) as compared to the actual recommendations made by the HCP. We computed CF participants’ adherence in relation to HCP treatment recommendations and to their own understanding of treatment recommendations (adherent/non-adherent). ResultsComplete HCP and patient data were available for 42 participants. The recommended treatment frequency was correctly understood by 0%-87.8% of CF participants. Adherence to HCP treatment recommendations ranged from 0 to 68.3% (mean 45.4%±21.5), and rates were low (<33%) for acapella, percussion/postural drainage, tobramycin nebulization and insulin. Participants’ adherence was greater when calculated in relation to participants’ understanding of treatment recommendations (62.4%±25.1) than when calculated in relation to actual HCP treatment recommendations (45.4%±21.5%) (p=0.009). Conclusion and practice implicationsAdults with CF misunderstand treatment recommendations; this likely affects treatment adherence. Interventions to ensure HCPs use effective communication strategies are needed.