Palliative and end-of-life care in cystic fibrosis: What we know and what we need to know

Current Opinion in Pulmonary Medicine

Volumn 15, Issue 6, 2009, Pages 621-625

  Robinson, Walter M ^a  

^a VANDERBILT UNIVERSITY MEDICAL CENTER   (United States)

Author keywords

Cystic fibrosis; End of life care; Palliative care

Indexed keywords

CYSTIC FIBROSIS; DECISION MAKING; DEMOGRAPHY; FAMILY RELATION; HUMAN; LUNG TRANSPLANTATION; MORTALITY; PALLIATIVE THERAPY; QUALITY OF LIFE; REVIEW;

CYSTIC FIBROSIS; HUMANS; LUNG TRANSPLANTATION; PALLIATIVE CARE; TERMINAL CARE;

EID: 70349799002     PISSN: 10705287     EISSN: 15316971     Source Type: Journal    
DOI: 10.1097/MCP.0b013e3283304c29     Document Type: Review

References (39)

1. Lanken PN, Terry PB, Delisser HM, et al. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med 2008; 177:912-927.
2. Andersen DH. Cystic fibrosis of the pancreas and its relation to celiac disease. Am J Dis Child 1938; 56:344-399.
3. di Sant'Agnese PA, Darling RC, Perera GA, Shea E. Abnormal electrolyte composition of sweat in cystic fibrosis of the pancreas. Am J Dis Child 1953; 86:618-619.
4. Shwachman H, Antonowicz I, Stern M. The sweat test in cystic fibrosis. Am J Dis Child 1961; 102:769.
5. Di Sant'Agnese PA. The pulmonary manifestations of fibrocystic disease of the pancreas. Dis Chest 1955; 27:654-667.
6. Matthews LW, Doershuk CF, Wise M, et al. A therapeutic regimen for patients with cystic fibrosis. J Pediatr 1964; 65:558-575.
7. Shwachman H, Kulczycki LL. Long-term study of one hundred five patients with cystic fibrosis. Am J Dis Child 1958; 96:6-15.
8. Patterson PR, Denning C, Kutscher AH, editors. Psychosocial aspects of cystic fibrosis: a model for chronic lung disease. New York: The Foundation of Thanatology; 1972. p. 234.
9. Editorial: A worthy campaign. New York Times. 1960; New York.
10. Davis PB, di Sant'Agnese PA. Assisted ventilation for patients with cystic fibrosis. J Am Med Assoc 1978; 239:1851-1854.
11. Scott J, Dennis C, Mullins P. Heart-lung transplantation for end-stage respiratory disease in cystic fibrosis patients. J R Soc Med 1993; 86:19-22. (Pubitemid 23123085)
12. Sharples L, Hathaway T, Dennis C, et al. Prognosis of patients with cystic fibrosis awaiting heart and lung transplantation. J Heart Lung Transplant 1993; 12:669-674. (Pubitemid 23227092)
13. Hill AT, Edenborough FP, Cayton RM, Stableforth DE. Long-term nasal intermittent positive pressure ventilation in patients with cystic fibrosis and hypercapnic respiratory failure (1991-1996). Respir Med 1998; 92:523-526.
14. Hodson ME, Madden BP, Steven MH, et al. Noninvasive mechanical ventilation for cystic fibrosis patients: a potential bridge to transplantation. Eur Respir J 1991; 4:524-527.
15. Liou TG, Adler FR, Cox DR, Cahill BC. Lung transplantation and survival in children with cystic fibrosis. N Engl J Med 2007; 357:2143-2152.
16. Aurora P, Carby M, Sweet S. Selection of cystic fibrosis patients for lung transplantation. Curr Opin Pulm Med 2008; 14:589-594.
17. Egan TM. Solid benefit of lung transplantation for some children with cystic fibrosis. Pediatr Transplant 2008; 12:125-128.
18. Corris PA. Lung transplantation for cystic fibrosis. Curr Opin Organ Transplant 2008; 13:484-488.
19. Moran F, Bradley J. Noninvasive ventilation for cystic fibrosis. Cochrane Database Syst Rev 2003:CD002769.
20. Hewer SC, Tyrrell J. Cystic fibrosis and the transition to adult health services. Arch Dis Child 2008; 93:817-821.
21. Philip JA, Gold M, Sutherland S, et al. End-of-life care in adults with cystic fibrosis. J Palliat Med 2008; 11:198-203.
22. Boyle MP. Adult cystic fibrosis. JAMA 2007; 298:1787-1793.
23. Sawicki GS, Sellers DE, McGuffie K, Robinson W. Adults with cystic fibrosis report important and unmet needs for disease information. J Cyst Fibros 2007; 6:411-416.
24. Moran F, Bradley JM, Piper AJ. Noninvasive ventilation for cystic fibrosis. Cochrane Database Syst Rev 2009:CD002769.
25. Stenbit A, Flume PA. Pulmonary complications in adult patients with cystic fibrosis. Am J Med Sci 2008; 335:55-59.
26. Flume PA, Stenbit A. Making the diagnosis of cystic fibrosis. Am J Med Sci 2008; 335:51-54.
27. Mitchell I, Nakielna E, Tullis E, Adair C. Cystic fibrosis: end-stage care in Canada. Chest 2000; 118:80-84.
28. Robinson WM, Ravilly S, Berde C, Wohl ME. End-of-life care in cystic fibrosis. Pediatrics 1997; 100 (2 Pt 1):205-209.
29. Bourke S, Doe S, Gascoigne A, et al. An integrated model of provision of palliative care to patients with cystic fibrosis. Palliat Med 2009 [Epub ahead of print].
30. Dellon EP, Leigh MW, Yankaskas JR, Noah TL. Effects of lung transplantation on inpatient end of life care in cystic fibrosis. J Cyst Fibros 2007; 6:396-402.
31. Ford D, Flume PA. Impact of lung transplantation on site of death in cystic fibrosis. J Cyst Fibros 2007; 6:391-395.
32. Sawicki GS, Dill EJ, Asher D, et al. Advance care planning in adults with cystic fibrosis. J Palliat Med 2008; 11:1135-1141.
33. Stenekes S, Hughes A, Gregoire M, et al. Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis. J Pain Symptom Manage 2009 [Epub ahead of print].
34. Goss CH, Edwards TC, Ramsey BW, et al. Patient-reported respiratory symptoms in cystic fibrosis. J Cyst Fibros 2009; 8:245-252.
35. Sawicki GS, Sellers DE, Robinson WM. Self-reported physical and psychological symptom burden in adults with cystic fibrosis. J Pain Symptom Manage 2008; 35:372-380.
36. Quittner AL, Barker DH, Snell C, et al. Prevalence and impact of depression in cystic fibrosis. Curr Opin Pulm Med 2008; 14:582-588.
37. Riekert KA, Bartlett SJ, Boyle MP, et al. The association between depression, lung function, and health-related quality of life among adults with cystic fibrosis. Chest 2007; 132:231-237.
38. Sawicki GS, Sellers DE, Robinson WM. High treatment burden in adults with cystic fibrosis: challenges to disease self-management. J Cyst Fibros 2009; 8:91-96.
39. McGuffie K, Sellers DE, Sawicki GS, et al. Self-reported involvement of family members in the care of adults with CF. J Cyst Fibros 2008; 7:95-101.