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

• Published in: Journal of cystic fibrosis Vol. 17; no. 1; pp. 71 - 77
• Main Authors: 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
• Format: Journal Article
• Language: English
• Published: Netherlands Elsevier B.V 01.01.2018
• Subjects: Anxiety; Chronic symptom burden; Cystic fibrosis; Depression; Palliative care; Pulmonary/Respiratory; Symptom prevalence; The Patient Health Questionnaire-9; cognitive–behavioral therapy; CF; CF-CARES; FEV 1 percent predicted; Depression; PHQ-9; MGH; Massachusetts General Hospital; Symptom prevalence; GAD-7; The Generalized Anxiety Disorder 7-Item Scale; CSSRS; CBT; Coping, goal Assessment, and Relief from Evolving CF Symptoms; cystic fibrosis; Palliative care; Anxiety; ppFEV 1; Columbia Suicide Severity Rating Scale; Chronic symptom burden; Cystic fibrosis; ppFEV1
• ISSN: 1569-1993; 1873-5010
• 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 ( C oping, goal A ssessment, and R elief from E volving CF S ymptoms) primary palliative care assessment model provides a framework for patients experiencing chronic symptoms to explore interventional options with their clinicians.