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

Journal of Cystic Fibrosis

Volumn 17, Issue 1, 2018, Pages 71-77

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

^a MASSACHUSETTS GENERAL HOSPITAL   (United States)

^b HARVARD MEDICAL SCHOOL   (United States)

^c BOSTON CHILDREN S HOSPITAL   (United States)

^d EMORY UNIVERSITY SCHOOL OF MEDICINE   (United States)

^e VERTEX PHARMACEUTICALS   (United States)

Author keywords

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

Indexed keywords

ABDOMINAL PAIN; ADOLESCENT; ADULT; ANXIETY; ARTHRALGIA; ARTICLE; AUTOMUTILATION; BACKACHE; BODY MASS; CHRONIC LUNG DISEASE; CHRONIC PAIN; CHRONIC SINUSITIS; CLINICAL ARTICLE; COPING BEHAVIOR; CORRELATIONAL STUDY; COUGHING; CYSTIC FIBROSIS; DEPRESSION; DESCRIPTIVE RESEARCH; DISEASE SEVERITY; DISTRESS SYNDROME; DYSPNEA; EDUCATIONAL STATUS; FEMALE; FOLLOW UP; FORCED EXPIRATORY VOLUME; HEADACHE; HUMAN; LIKERT SCALE; MALE; PALLIATIVE THERAPY; PANCREATIC INSUFFICIENCY; PATIENT HEALTH QUESTIONNAIRE 9; PSEUDOMONAS INFECTION; QUALITY OF LIFE; SELF CARE; SINUS PAIN; STRUCTURED INTERVIEW; SUICIDAL BEHAVIOR; SUICIDAL IDEATION; THORAX PAIN; URINE INCONTINENCE; COST OF ILLNESS; NONBIOLOGICAL MODEL; ORGANIZATION AND MANAGEMENT; PATHOPHYSIOLOGY; PATIENT CARE; PROCEDURES; PSYCHOLOGY; SYMPTOM ASSESSMENT;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; ANXIETY; COST OF ILLNESS; CYSTIC FIBROSIS; DEPRESSION; FEMALE; HUMANS; MALE; MODELS, ORGANIZATIONAL; PALLIATIVE CARE; PATIENT CARE MANAGEMENT; SELF-MANAGEMENT; SYMPTOM ASSESSMENT;

EID: 85019708306     PISSN: 15691993     EISSN: 18735010     Source Type: Journal    
DOI: 10.1016/j.jcf.2017.02.011     Document Type: Article

References (29)

1. Goss, C.H., Edwards, T.C., Ramsey, B.W., Aitken, M.L., Patrick, D.L., Patient-reported respiratory symptoms in cystic fibrosis. J Cyst Fibros 8:4 (2009 Jul), 245–252 [PubMed PMID: 19481983, Epub 2009/06/02. eng].
2. Sawicki, G.S., Sellers, D.E., Robinson, W.M., Self-reported physical and psychological symptom burden in adults with cystic fibrosis. J Pain Symptom Manage 35:4 (2008 Apr), 372–380 [PubMed PMID: 18215497. Epub: 2008/01/22. eng].
3. Sawicki, G.S., Sellers, D.E., Robinson, W.M., High treatment burden in adults with cystic fibrosis: challenges to disease self-management. J Cyst Fibros 8:2 (2009 Mar), 91–96 [Pubmed Central PMCID: 2680350, Epub 2008/10/28. eng].
4. Quittner, A.L., Goldbeck, L., Abbott, J., Duff, A., Lambrecht, P., Solé A., et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax 69:12 (2014 Dec), 1090–1097 [PubMed PMID: 25246663, Epub 2014/09/21. eng].
5. Smith, B.A., Modi, A.C., Quittner, A.L., Wood, B.L., Depressive symptoms in children with cystic fibrosis and parents and its effect on adherence to airway clearance. Pediatr Pulmonol 45 (2010), 756–763 [PubMed PMID: 20597082, Epub 2010/07/01. eng].
6. Grenard, J.L., Munjas, B.A., Adams, J.L., Suttrop, M., Maglione, M., McGlynn, E.A., et al. Depression and medication adherence in the treatment of chronic diseases in the United States: a meta-analysis. J Gen Intern Med 26 (2011), 1175–1182 [PubMED PMID: 21533823, Epub 2011/05/01. eng].
7. Havermans, T., Colpaert, K., Dupont, L.J., Quality of life in patients with cystic fibrosis: association with anxiety and depression. J Cyst Fibros 7 (2008), 581–584 [PubMed PMID: 18692444, Epub 2008/04/17. eng].
8. Snell, C., Fernandes, S., Bujoreanu, I.S., Garcia, G., Depression, illness severity, and healthcare utilization in cystic fibrosis. Pediatr Pulmonol 49 (2014), 1177–1181 [PubMed PMID: 24619910, Epub 2014/03/12. eng].
9. Riekert, K.A., Bartlett, S.J., Boyle, M.P., Krishnan, J.A., Rand, C.S., The association between depression, lung function, and health-related quality of life among adults with cystic fibrosis. Chest 132:1 (2007 Jul), 231–237 [PubMed PMID: 17625085. Epub 2007/07. eng].
10. Yohannes, A.M., Willgoss, T.G., Fatoye, F.A., Dip, M.D., Webb, K., Relationship between anxiety, depression, and quality of life in adult patients with cystic fibrosis. Respir Care 57:4 (2012 Apr), 550–556 [PubMed PMID: 22004950, Epub 2011/10/13. eng].
11. Quittner, A.L., Zhang, J., Marynchenko, M., Chopra, P.A., Signorovitch, J., Yushkina, Y., et al. Pulmonary medication adherence and healthcare utilization in cystic fibrosis. Chest 146:1 (2014 Jul), 142–151 [PubMed PMID: 24480974. Epub 2014/07. eng].
12. Modi, A.C., Quittner, A.L., Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol 28:8 (2003), 535–545 [PubMed PMID: 14602844, Epub 2003/3/31. eng].
13. Linnemann, R.W., O'Malley, P.J., Friedman, D., Georgiopoulos, A.M., Buxton, D., Altstein, L.L., et al. Development and evaluation of a palliative care curriculum for cystic fibrosis healthcare providers. J Cyst Fibros 15:1 (2016 Jan), 90–95 [PubMed PMID: 25817162, Epub 2015 Mar 25. eng].
14. Karlekar, M., Doherty, K.E., Guyer, D., Slovis, B., Palliative medicine paper integration of palliative care into the routine care of cystic fibrosis patients. Palliat Med 29:3 (2015), 282–283 [PubMed PMID: 25524961, Epub 2014/12/18. eng].
15. Bourke, S.J., Doe, S.J., Gascoigne, A.D., Heslop, K., Fields, M., Reynolds, D., et al. An integrated model of provision of palliative care to patients with cystic fibrosis. Palliat Med 23:6 (2009 Sep), 512–517 [PubMed PMID: 19460834, Epub 2009/05/21. eng].
16. Mitchell, I., Nakielna, E., Tullis, E., Adair, C., Cystic fibrosis. End-stage care in Canada. Chest 118:1 (2000 Jul), 80–84 [PubMed PMID: 10893363. Epub 2000/07. eng].
17. Philip, J.A., Gold, M., Sutherland, S., Finlayson, F., Ware, C., Braithwaite, M., et al. End-of-life care in adults with cystic fibrosis. J Palliat Med 11:2 (2008 Mar), 198–203 [PubMed PMID: 18333734, Epub 2008/03/11. eng].
18. Robinson, W.M., Palliative and end-of-life care in cystic fibrosis: what we know and what we need to know. Curr Opin Pulm Med 15:6 (2009 Nov), 621–625 [PubMed PMID: 19644376. Epub 2009/11. eng].
19. Robinson, W.M., Ravilly, S., Berde, C., Wohl, M.E., End-of-life care in cystic fibrosis. Pediatrics 100:2 Pt 1 (1997 Aug), 205–209 [PubMed PMID: 9240800. Epub 1997/08. eng].
20. Sands, D., Repetto, T., Dupont, L.J., Korzeniewska-Eksterowicz, A., Catastini, P., Madge, S., End of life care for patients with cystic fibrosis. J Cyst Fibros 10:Suppl. 2 (2011 Jun), S37–S44 [PubMed PMID: 21658640. Epub 2011/06. eng].
21. Quill, T.E., Abernaty, A.P., Generalist plus specialist palliative care-creating a more sustainable model. N Engl J Med 368:13 (Mar 28 2013), 1173–1175 [PubMed PMID: 23465068].
22. Quittner, A.L., Abbott, J., Georgiopoulos, A.M., Goldbeck, L., Smith, B., Hempstead, S.E., et al. Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety. Thorax 71:1 (2015 Jan), 26–34 [PubMed PMID: 26452630, Epub 2015/10/09. eng].
23. Kroenke, K., Spitzer, R.L., Williams, J.B., The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 16:9 (2001), 606–613 [PubMed PMID: 11556941. Epub 2001/09. eng].
24. Spitzer, R.L., Kroenke, K., Williams, J.B.W., Lowe, B., A brief measure for assessing generalized anxiety disorder. Arch Intern Med 166:10 (2006), 1092–1097 [PubMed PMID: 16717171, Epub 2006/05/22. eng].
25. Posner, K., Brown, G.K., Stanley, B., Brent, D.A., Yershova, K.V., Oquendo, M.A., et al. The Columbia-suicide severity rating scale; initial validity and internal consistency findings from three multisite studies with adolescents and adults. Am J Psychiatry 168:12 (2011), 1266–1277 [PubMed PMID: 22193671. Epub 2011/12. eng].
26. Cornacchia, M., Zenorini, A., Perobelli, S., Zanolla, L., Mastella, G., Braggion, C., Prevalence of urinary incontinence in women with cystic fibrosis. BJU Int 88:1 (2001 Jul), 44–48 [PubMed PMID: 11446844, Epub 2001/12/20. eng].
27. McQuaid, E.L., Walders, N., Kopel, S.J., Fritz, G.K., Klinnert, M.D., Pediatric asthma management in the family context: The Family Asthma Management System Scale. J Pediatr Psychol 30:6 (2005 Sep), 492–502 [Epub 2005/03/03. eng].
28. Latchford, G., Duff, A.J., Screening for depression in a single CF centre. J. Cyst. Fibros. Dec. 12:6 (2013), 794–796 PubMed: 23628513. [Epub 2013/04/26. eng].
29. Quon, B.S., Bentham, W.D., Unutzer, J., Chan, Y.F., Goss, C.H., Aitken, M.L., Prevalence of symptoms and depression and anxiety in adults with cystic fibrosis based on the PHQ-9 and GAD-7 screening questionnaires. Psychosomatics 56:4 (2015 Jul-Aug), 345–353 [PubMed: 25556569, Epub 2014/06/02. eng].