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

Deborah Friedman; Rachel W Linnemann; Lily L Altstein; Suhayla Islam; Kieu-Tram Bach; Chelsea Lamb; John Volpe; Caitlin Doolittle; Anita St John; Patricia J O'Malley; Gregory S Sawicki; Anna M Georgiopoulos; Lael M Yonker; Samuel M Moskowitz

doi:10.1016/j.jcf.2017.02.011

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

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

Affiliations

¹ Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA; Department of Psychiatry, Harvard Medical School, Boston, MA, USA. Electronic address: dfriedman@mgh.harvard.edu.
² Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
³ Department of Biostatistics, Massachusetts General Hospital, Boston, MA, USA.
⁴ Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
⁵ Department of Pediatrics, Harvard Medical School, Boston, MA, USA; Department of Medicine, Boston Children's Hospital, Boston, MA, USA.
⁶ Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA; Department of Psychiatry, Harvard Medical School, Boston, MA, USA.

PMID: 28302366
DOI: 10.1016/j.jcf.2017.02.011

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological
Adolescent
Adult
Anxiety* / diagnosis
Anxiety* / physiopathology
Cost of Illness*
Cystic Fibrosis* / psychology
Cystic Fibrosis* / therapy
Depression* / diagnosis
Depression* / physiopathology
Female
Humans
Male
Models, Organizational
Palliative Care* / methods
Palliative Care* / psychology
Patient Care Management / organization & administration
Self-Management / psychology*
Symptom Assessment / psychology