Improving the management of dyspnea in the community using rapid learning approaches

Chronic Respiratory Disease

Volumn 9, Issue 1, 2012, Pages 51-61

  Kamal, Arif H ^a   Miriovsky, Benjamin J ^a   Currow, David C ^b   Abernethy, Amy P ^a,b  

^a DUKE UNIVERSITY MEDICAL CENTER   (United States)

^b FLINDERS UNIVERSITY   (Australia)

Author keywords

Dyspnea; palliative care; quality of life; rapid learning health care; symptom management

Indexed keywords

MORPHINE; OXYGEN;

CHRONIC OBSTRUCTIVE LUNG DISEASE; CLINICAL TRIAL (TOPIC); DEPRESSION; DRUG DOSE ESCALATION; DYSPNEA; FORGIVENESS; HEALTH CARE; HUMAN; LEARNING STYLE; MEDICAL ASSESSMENT; OUTCOME ASSESSMENT; PRIORITY JOURNAL; QUALITY OF LIFE; RANDOMIZED CONTROLLED TRIAL (TOPIC); RELIABILITY; REVIEW; VALIDITY; VISUAL ANALOG SCALE;

CHRONIC DISEASE; DYSPNEA; HUMANS; INDIVIDUALIZED MEDICINE; PALLIATIVE CARE; PATIENT SATISFACTION; QUALITY OF LIFE; RESPIRATORY TRACT DISEASES; TRANSLATIONAL MEDICAL RESEARCH;

EID: 84856692314     PISSN: 14799723     EISSN: 14799731     Source Type: Journal    
DOI: 10.1177/1479972311433576     Document Type: Review

References (48)

1. Kochanek KD, Xu J, Murphy SL, Minino AM, Kung H-C.. Deaths: Preliminary data for 2009. Natl Vital Stats Reports. 2011 ; 59 (4). 1-51
2. Causes of death statistics.
3. Menezes AM, Perez-Padilla R, Jardim JR, et al. Chronic obstructive pulmonary disease in five Latin American cities (the PLATINO study): a prevalence study. Lancet. 2005 ; 366 (9500). 1875-1887
4. Xu F, Yin X, Zhang M, Shen H, Lu L, Xu Y. Prevalence of physician-diagnosed COPD and its association with smoking among urban and rural residents in regional mainland China. Chest. 2005 ; 128 (4). 2818-2823 (Pubitemid 41507645)
5. Dyspnea. Mechanisms, assessment, and management: a consensus statement. American Thoracic Society. Am J Respir Crit Care Med. 1999 ; 159: 321-340
6. Chapman KR, Mannino DM, Soriano JB, et al. Epidemiology and costs of chronic obstructive pulmonary disease. Europ Resp J. 2006 ; 27 (1). 188-207 (Pubitemid 43092683)
7. Barnes PJ. Chronic obstructive pulmonary disease: a growing but neglected global epidemic. PLoS Med. 2007 ; 45: 779-780
8. Lopez AD, Shibuya K, Rao C, et al. Chronic obstructive pulmonary disease: current burden and future projections. Eur Resp J. 2006 ; 27 (2). 297-412
9. Claessens MT, Lynn J, Zhong Z, et al. Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. Study to understand prognoses and preferences for outcomes and risks of treatments. J Am Geriatr Soc. 2000 ; 48 (5 Suppl). S146 - S153
10. Currow DC, Smith J, Davidson PM, Newton PJ, Agar MR, Abernethy AP. Do the trajectories of dyspnea differ in prevalence and intensity by diagnosis at the end of life? A consecutive cohort study. J Pain Symptom Manage. 2010 ; 39 (4). 680-690
11. Elmqvist MA, Jordhoy MS, Bjordal K, Kassa S, Jannert M. Health-related quality of life during the last three months of life in patients with advanced cancer. Support Care Cancer. 2009 ; 17: 191-198
12. Kuhner JS, Kassner CT, Nowels DE. Symptom burden at the end of life: hospice providers' perceptions. J Pain Symptom Manage. 2001 ; 21: 473-480 (Pubitemid 32492933)
13. Moy ML, Reilly JJ, Ries AL, et al. Multivariate models of determinants of health-related quality of life in severe chronic obstructive pulmonary disease. J Rehabil Res Dev. 2009 ; 46 (5). 643-654
14. Saunders DC. Care of patients suffering from terminal illness at St. Joseph's Hospice, Hackney, London. Nurs Mirror. 1964 ; a: vii - x
15. Abernethy AP, Wheeler JL. Total dyspnea. Curr Opin Support Palliat Care. 2008 ; 2: 110-113
16. Ramasamy R, Hidebrandt T, O'Hea E, et al. Psychological and social factors that correlate with dyspnea in heart failure. Psychosomatics. 2006 ; 47 (5). 430-434
17. Edmonds P, Higginson I, Altmann D, Sen-Gupta G, McDonnell M. Is the presence of dyspnea a risk factor for morbidity in cancer patients?. J Pain Symptom Manage. 2000 ; 19 (1). 15-22 (Pubitemid 30067619)
18. Kamal AH, Maguire JM, Wheeler JL, Currow DC, Abernethy AP. Dyspnea review for the palliative care professional: assessment, burdens, and etiologies. J Palliat Med. 2011 ; 14 (10). 1167-1172
19. Harver A, Mahler DA, Schwartzstein RM, Baird JC. Descriptors of breathlessness in healthy individuals: distinct and separable constructs. Chest. 2000 ; 118: 679-690
20. Portenoy RK, Thaler HT, Kornblith AB, et al. The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer. 1994 ; 30A: 1326-1336 (Pubitemid 24322071)
21. Abernethy AP, Zafar SY, Uronis H, et al. Validation of the Patient Care Monitor (Version 2.0): a review of system assessment instrument for cancer patients. J Pain Sympt Manage. 2010 ; 40 (4). 545-558
22. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991 ; 7: 6-9
23. Tanaka K, Akechi T, Okuyama T, Nishiwaki Y, Uchitomi Y. Development and validation of the Cancer Dyspnoea Scale: a multidimensional, brief, self-rating scale. Brit J Cancer. 2000 ; 82: 800-805 (Pubitemid 30085229)
24. Uronis HE, Shelby RA, Currow DC, et al. Assessment of the psychometric properties of an English version of the Cancer Dyspnea Scale in people with advanced lung cancer. J Pain Symptom Manage. 2012 ;:
25. Currow DC, Plummer JL, Crockett A, Abernethy AP. A community population survey of prevalence and severity of dyspnea in adults. J Pain Symptom Manage. 2009 ; 38 (4). 533-545
26. Kreuter M, Herth FJ. Supportive and palliative care of advanced nonmalignant lung disease. Respiration. 2011 ; 82 (4). 307-316
27. Abernethy AP, McDonald C, Frith P Annual Assembly of the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association. 2009 :
28. Currow DC, McDonald C, Oaten S, et al. Once-daily opioids for chronic dyspnea: a dose increment and pharmacovigilance study. J Pain Symptom Manage. 2011 ; 42 (3). 388-399
29. Roberts CM. Short burst oxygen therapy for relief of breathlessness in COPD. Thorax. 2004 ; 59 (8). 638-640 (Pubitemid 39061522)
30. Escalante CP, Martin CG, Elting LS, et al. Dyspnea in cancer patients. Etiology, resource utilization, and survival-implications in a managed care world. Cancer. 1996 ; 78 (6). 1314-1319 (Pubitemid 26303900)
31. Continuous or nocturnal oxygen therapy in hypoxemic chronic obstructive lung disease: a clinical trial. Ann Intern Med. 1980 ; 93 (3). 391-398
32. Long term domiciliary oxygen therapy in chronic hypoxic cor pulmonale complicating chronic bronchitis and emphysema. Lancet. 1981 ; 1 (8222). 681-686
33. Abernethy AP, Herndon JE, Wheeler JL, et al. Feasibility and acceptability to patients of a longitudinal system for evaluating cancer-related symptoms and quality of life: pilot study of an e/Tablet data-collection system in academic oncology. J Pain Symptom Manage. 2009 ; 37 (6). 1027-1038
34. Currow DC, Fazekas B, Abernethy AP. Oxygen use-patients define symptomatic benefit discerningly. J Pain Symptom Manage. 2007 ; 34 (2). 113-114 (Pubitemid 47088907)
35. Uronis HE, Currow DC, Abernethy AP. Palliative management of refractory dyspnea in COPD. Int J Chron Obstruct Pulmon Dis. 2006 ; 1 (3). 289-304
36. Etheredge LM. A rapid-learning health system. Health Aff. 2007 ; 26: w107 - w118
37. Slutsky JR. Moving closer to a rapid-learning health care system. Health Aff. 2007 ; 26: 122-124
38. Abernethy AP, Ahmad A, Zafar SY, Wheeler JL, Reese JB, Lyerly HK. Electronic patient-reported data capture as a foundation of rapid learning cancer care. Med Care. 2010 ; 48 (6 Suppl). S32 - S38
39. The Learning Healthcare System:Workshop Summary (IOM Roundtable on Evidence-Based Medicine). Washington, DC: National Academies Press ; 2007 :
40. Velikova G, Brown JM, Smith AB, Selby PJ. Computer-based quality of life questionnaires may contribute to doctor-patient interactions in oncology. Brit J Cancer. 2001 ; 86 (1). 51-59 (Pubitemid 34146340)
41. Ruland CM, White T, Stevens M, Fanciullo G, Khilani SM. Effects of a computerized system to support shared decision making in symptom management of cancer patients: preliminary results. J Am Med Inform Assoc. 2003 ; 10 (6). 573-579 (Pubitemid 37377467)
42. Gwaltney CJ, Shields AL, Shiffman S.. Equivalence of electronic and paper-and-pencil administration of patient-reported outcome measures: a meta-analytic review. Value Health. 2008 ; 11 (2). 322-333 (Pubitemid 351473608)
43. Abernethy AP, Herndon JE, Wheeler JL, et al. Improving health care efficiency and quality using tablet personal computers to collect research-quality, patient-reported data. Health Serv Res. 2008 ; 43 (6). 1975-1991
44. Abernethy AP, Herndon JE, Coan A, et al. Phase 2 pilot study of Pathfinders: a psychosocial intervention for cancer patients. Support Care Cancer. 2010 ; 18 (7). 893-898
45. Smith SK, Herndon JE, Lyerly HK, et al. Correlates of quality of life-related outcomes in breast cancer patients participating in the Pathfinders pilot study. Psychooncology. 2011 ; 20 (5). 559-564
46. Reese JB, Shelby RA, Keefe FJ, Porter LS, Abernethy AP. Sexual concerns in cancer patients: a comparison of GI and breast cancer patients. Support Care Cancer. 2010 ; 18: 1179-1189
47. Bull J, Zafar SY, Wheeler JL, et al. Establishing a regional, multisite database for quality improvement and service planning in community-based palliative care and hospice. J Palliat Med. 2010 ; 13 (8). 1013-1020
48. Kamal AH, Bull J, Stinson C, et al. Collecting data on quality is feasible in community-based palliative care. J Pain Symptom Manage. 2011 ; 42 (5). 663-667