Patient Attitudes Regarding Health Care Clinician Communication in Adolescents with Cystic Fibrosis.

Abstract

The quality of health care clinician (HCC) communication varies, yet few studies evaluate ways to improve communication among adolescents with cystic fibrosis (CF). We sought to characterize the attitudes of adolescents and young adults (AYA) with CF about HCC communication and describe the components important for high-quality communication. AYA with CF aged 12-20 years from a single large pediatric CF care center participated in a brief survey and semi-structured individual and group virtual interviews that were recorded, transcribed, coded and analyzed with a combined deductive and inducive approach. Discrepancies were resolved by consensus. Among the 39 survey respondents, most were white (77%), male (51%), and averaged 15.51 years (range 12 - 20 years). Many (40%) perceived their health status as "neutral" and over half (61%) were "very satisfied" with HCC communication. Overall, among the 17 interviews (averaged 53.6 minutes, range 31.5-74 min), participants reported a desire to be actively engaged in discussions about their health and included in the decision-making process with HCC to support adolescent autonomy and cultivate trust. Some factors detract (loss of control and fear of diagnosis), and others strengthen (transition to adult care and external motivators) adolescent autonomy. Some factors detract (perceived lack of interdisciplinary communication, statements of non-compliance, and being compared to others) and others strengthen (inherent trust and familiarity over time) the cultivation of trust. The development of adolescent autonomy and the cultivation and maintenance of trust between the patient and HCC are two essential components of quality communication that should inform future communication-focused interventions.