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

被引：23

作者：

Friedman, Deborah ^{[1
,4
]}

Linnemann, Rachel W. ^{[2
,5
,7
]}

Altstein, Lily L. ^{[3
]}

Islam, Suhayla ^{[2
]}

Bach, Kieu-Tram ^{[2
]}

Lamb, Chelsea ^{[2
]}

Volpe, John ^{[2
]}

Doolittle, Caitlin ^{[2
]}

John, Anita St. ^{[2
]}

O'Malley, Patricia J. ^{[2
,5
]}

Sawicki, Gregory S. ^{[5
,6
]}

Georgiopoulos, Anna M. ^{[1
,4
]}

Yonker, Lael M. ^{[2
,5
]}

Moskowitz, Samuel M. ^{[2
,5
,8
]}

机构：

[1] Massachusetts Gen Hosp, Dept Psychiat, 55 Fruit St, Boston, MA 02114 USA

[2] Massachusetts Gen Hosp, Dept Pediat, Boston, MA 02114 USA

[3] Massachusetts Gen Hosp, Dept Biostat, Boston, MA 02114 USA

[4] Harvard Med Sch, Dept Psychiat, Boston, MA USA

[5] Harvard Med Sch, Dept Pediat, Boston, MA USA

[6] Boston Childrens Hosp, Dept Med, Boston, MA USA

[7] Emory Univ, Sch Med, Dept Pediat, Atlanta, GA USA

[8] Vertex Pharmaceut Inc, Boston, MA USA

来源：

JOURNAL OF CYSTIC FIBROSIS | 2018年 / 17卷 / 01期

关键词：

Cystic fibrosis; Palliative care; Chronic symptom burden; Symptom prevalence; Depression; Anxiety; QUALITY-OF-LIFE; CYSTIC-FIBROSIS; MEDICATION ADHERENCE; DEPRESSION; ADULTS; ANXIETY; END; PREVALENCE; SEVERITY; ASSOCIATION;

D O I：

10.1016/j.jcf.2017.02.011

中图分类号：

R56 [呼吸系及胸部疾病];

学科分类号：

摘要：

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. (C) 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

引用

页码：71 / 77

页数：7

共 2 条

[1] DEVELOPMENT OF A CF-SPECIFIC PALLIATIVE CARE CURRICULUM AND ASSESSMENT OF CF PROVIDER COMFORT WITH PALLIATIVE CARE SKILLS
Linnemann, R. W.
Buxton, D.
O'Malley, P. J.
Friedman, D.
Georgiopoulos, A. M.
Sicilian, L.
Sawicki, G. S.
Moskowitz, S. M.
[J]. PEDIATRIC PULMONOLOGY, 2014, 49 : 428 - 429
[2] QUALITY OF LIFE AND MENTAL HEALTH OUTCOMES OF THE CF-CARES PRIMARY PALLIATIVE CARE MODEL FOR CYSTIC FIBROSIS
Friedman, D.
Linnemann, R. W.
Altstein, L.
Georgiopoulos, A.
Islam, S.
Bach, K.
St John, A.
Moskowitz, S. M.
Yonker, L. M.
[J]. PEDIATRIC PULMONOLOGY, 2017, 52 : S502 - S502

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