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

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FRIEDMAN, Deborah | LINNEMANN, Rachel W. | ALTSTEIN, Lily L. | ISLAM, Suhayla | BACH, Kieu-Tram | LAMB, Chelsea | VOLPE, John | DOOLITTLE, Caitlin | ST JOHN, Anita | O'MALLEY, Patricia J. | SAWICKI, Gregory S. | GEORGIOPOULOS, Anna M. | YONKER, Lael M. | MOSKOWITZ, Samuel 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.

http://www.cysticfibrosisjournal.com/article/S1569-1993(17)30077-2/pdf

Voir la revue «Journal of cystic fibrosis, 17»

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