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The CF-CARES primary palliative care model: A CF-specific structured assessment of symptoms, distress, and coping

Journal title
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society
Publication year
Friedman, D.; Linnemann, R. W.; Altstein, L. L.; Islam, S.; Bach, K. T.; Lamb, C.; Volpe, J.; Doolittle, C.; St John, A.; O'Malley, P. J.; Sawicki, G. S.; Georgiopoulos, A. M.; Yonker, L. M.; Moskowitz, S. M.

BACKGROUND: Current palliative care tools do not address distressing chronic symptoms that are most relevant to cystic fibrosis. METHODS: A CF-specific structured assessment based on a primary palliative care framework was administered to 41 adolescents and adults with CF. Descriptive and correlational analyses were conducted. RESULTS: Patients reported numerous physical and psychological symptoms (mean of 10 per patient), with psychological symptoms rated as more distressing. Anxiety (34%) and depression (44%) were prevalent and correlated with distress attributable to physical symptoms and difficulty with CF self-management, but did not correlate with disease severity. CONCLUSIONS: Individuals with CF, regardless of disease severity, face challenges managing symptom burden. Frequently reported symptoms are not consistently associated with distress, suggesting the importance of individualized evaluation. The CF-CARES (Coping, goal Assessment, and Relief from Evolving CF Symptoms) primary palliative care assessment model provides a framework for patients experiencing chronic symptoms to explore interventional options with their clinicians.

Research abstracts