A qualitative study on the experiences and perspectives of adults with cystic fibrosis and healthcare professionals.

BACKGROUND

Cystic fibrosis (CF) is a multisystemic disease increasingly affecting adults due to improved survival rates. However, the functional outcomes, participation in daily life, and influence of environmental factors in adults with CF remain underexplored. This study aimed to evaluate the impairments and multidimensional functioning of adults with CF within the International Classification of Functioning, Disability and Health (ICF) framework, based on the perspectives of both patients and healthcare professionals.

MATERIALS AND

METHODS

A qualitative multicenter study was conducted with 101 participants, including 30 adults with CF (≥18 years) and 71 healthcare professionals (27 physicians, 40 physiotherapists, and 4 nurses). Adults with CF participated in in-depth interviews, while healthcare professionals completed an online questionnaire containing six open-ended ICF-based questions.

RESULTS

Eighty-three ICF categories were identified: body structures (20.5%), body functions (28.9%), activities and participation (20.5%), and environmental factors (30.1%). Both groups most frequently referred to lungs (s4301), sensations associated with cardiovascular and respiratory functions (b460), socializing (d9205), and immediate family (e310). Adults with CF emphasized environmental influences-such as e310-immediate family (76.67%), e1101-drugs (83.33%), and d9205-socializing (%73)-more than healthcare professionals, who focused primarily on physiological and e580-health services, systems and policies (67.61%).

CONCLUSIONS

The most prominent ICF categories identified in both groups reflect the physical, psychosocial, and environmental dimensions of CF. Adults with CF placed greater emphasis on environmental and social factors, whereas healthcare professionals focused more on physiological aspects. These findings highlight the importance of the ICF framework, which supports a biopsychosocial, patient-centered, and multidisciplinary approach in the assessment of adults with CF.

CLINICAL TRIAL REGISTRATION: NCT06128499.