Self-Management of Cystic Fibrosis in Adolescents and Young Adults: The Role of Behavioral Motivation and Executive Skills for Treatment Engagement

Adolescents and young adults with cystic fibrosis in the modern modulator era are experiencing improved health and longer lifespans than ever before. However, these advancements may also create a lower symptom context that reduces engagement in complex, time-intensive treatment regimens, particularly respiratory therapies, that remain essential to medical care. Drawing on behavioral theory and developmental neuroscience perspectives, this study explored how improved health and competing psychosocial priorities influence treatment engagement and if executive functioning may contribute to increased engagement in therapies for adolescents and young adults with cystic fibrosis. A secondary data analysis was conducted using survey data from 31 participants with cystic fibrosis (ages 15–20). Participants completed validated measures assessing treatment frequency, perceived physical health, psychosocial quality of life, and executive functioning. Results showed that better perceived physical health and greater psychosocial quality of life were marginally associated with large effect sizes with lower treatment engagement; however, executive functioning did not significantly moderate these relationships. These findings support the hypothesis that improved physical well-being may be associated with decreased reinforcement value of treatments, and improved psychosocial well-being may be related to increased competing reinforcers from immediately rewarding normative activities of this developmental period. Further, although executive functioning is theoretically working in support of goal-directed behavior, the role of executive functioning in treatment engagement for youth with cystic fibrosis may be more nuanced and context-dependent. In conclusion, these findings point to a need to consider the potential impact of modern treatment approaches to cystic fibrosis on treatment engagement and novel intervention approaches to address those changes while supporting long-term health and well-being in adolescents and young adults with cystic fibrosis.