Palliative care needs in cystic fibrosis: hospital survey

Background: Cystic fibrosis (CF) is an incurable, progressive disease that affects multiple organs, causing burdensome symptoms. This study aimed to explore the palliative care needs in patients with CF, focusing on health-related quality of life (HRQOL), fatigue, anxiety and depression.

Methods: From October 2019 to March 2020, a cross-sectional questionnaire survey was conducted with outpatients with CF at the Infectious Medicine Clinic in a Danish University Hospital.

Results: 130 patients completed at least one questionnaire. Mean age was 35.5 years (SD 11.5), with 51.7% males. Charlson's comorbidity index mean score was 1.3 (SD 1.6). Patients with CF had significantly lower scores in general health, vitality, social functioning, role emotional and mental health compared with the Danish population. Mean fatigue score of patients was 50.9 (SD 16.2), with the highest scores in general fatigue, physical fatigue and reduced activity. Additionally, 33% indicated anxiety and 19.5% depression. 51.6% were treated with Tezacaftor/Ivacaftor or Lumacaftor/Ivacaftor.

Conclusion: This study found poor HRQOL and burdensome symptoms of fatigue, anxiety and depression in patients with CF compared with the general Danish population. The results suggest that systematic assessments and palliative care interventions should be integrated into routine CF care.