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. 2018 Jan;17(1):71-77.
doi: 10.1016/j.jcf.2017.02.011. Epub 2017 Mar 14.

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

Deborah Friedman  1 , Rachel W Linnemann  2 , Lily L Altstein  3 , Suhayla Islam  4 , Kieu-Tram Bach  4 , Chelsea Lamb  4 , John Volpe  4 , Caitlin Doolittle  4 , Anita St John  4 , Patricia J O'Malley  2 , Gregory S Sawicki  5 , Anna M Georgiopoulos  6 , Lael M Yonker  2 , Samuel M Moskowitz  2
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Free article

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

Deborah Friedman et al. J Cyst Fibros. 2018 Jan.
Free article

Abstract

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.

Keywords: Anxiety; Chronic symptom burden; Cystic fibrosis; Depression; Palliative care; Symptom prevalence.

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