title: The CF-CARES primary palliative care model: A CF-specific structured assessment of symptoms, distress, and coping.
abstract: Current palliative care tools do not address distressing chronic symptoms that are most relevant to cystic fibrosis.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA; Department of Psychiatry, Harvard Medical School, Boston, MA, USA. Electronic address: dfriedman@mgh.harvard.edu.
authors.forename: Deborah
authors.initials: D
authors.lastname: Friedman
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
authors.forename: Rachel W
authors.initials: RW
authors.lastname: Linnemann
authors.affiliation: Department of Biostatistics, Massachusetts General Hospital, Boston, MA, USA.
authors.forename: Lily L
authors.initials: LL
authors.lastname: Altstein
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
authors.forename: Suhayla
authors.initials: S
authors.lastname: Islam
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
authors.forename: Kieu-Tram
authors.initials: KT
authors.lastname: Bach
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
authors.forename: Chelsea
authors.initials: C
authors.lastname: Lamb
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
authors.forename: John
authors.initials: J
authors.lastname: Volpe
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
authors.forename: Caitlin
authors.initials: C
authors.lastname: Doolittle
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
authors.forename: Anita
authors.initials: A
authors.lastname: St John
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
authors.forename: Patricia J
authors.initials: PJ
authors.lastname: O'Malley
authors.affiliation: Department of Pediatrics, Harvard Medical School, Boston, MA, USA; Department of Medicine, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Gregory S
authors.initials: GS
authors.lastname: Sawicki
authors.affiliation: Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA; Department of Psychiatry, Harvard Medical School, Boston, MA, USA.
authors.forename: Anna M
authors.initials: AM
authors.lastname: Georgiopoulos
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
authors.forename: Lael M
authors.initials: LM
authors.lastname: Yonker
authors.affiliation: Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
authors.forename: Samuel M
authors.initials: SM
authors.lastname: Moskowitz
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001007:Anxiety / Q000175:diagnosis / Q000503:physiopathology; D017281:Cost of Illness; D003550:Cystic Fibrosis / Q000523:psychology / Q000628:therapy; D003863:Depression / Q000175:diagnosis / Q000503:physiopathology; D005260:Female; D006801:Humans; D008297:Male; D017146:Models, Organizational; D010166:Palliative Care / Q000379:methods / Q000523:psychology; D010346:Patient Care Management / Q000458:organization & administration; D000073278:Self-Management / Q000523:psychology*; D063189:Symptom Assessment / Q000523:psychology
keywords: Anxiety; Chronic symptom burden; Cystic fibrosis; Depression; Palliative care; Symptom prevalence