Impact of a disease-management program on symptom burden and health-related quality of life in patients with idiopathic pulmonary fibrosis and their care partners

Heart and Lung: Journal of Acute and Critical Care

Volumn 39, Issue 4, 2010, Pages 304-313

  Lindell, Kathleen Oare ^a   Olshansky, Ellen ^b   Song, Mi Kyung ^c   Zullo, Thomas G ^d   Gibson, Kevin F ^a   Kaminski, Naftali ^a   Hoffman, Leslie A ^d  

^a UNIVERSITY OF PITTSBURGH SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF CALIFORNIA   (United States)

^c UNIVERSITY OF NORTH CAROLINA   (United States)

^d UNIVERSITY OF PITTSBURGH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ANXIETY; ARTICLE; CAREGIVER; CLINICAL ARTICLE; CONTROLLED STUDY; DYSPNEA; FEMALE; FIBROSING ALVEOLITIS; HEALTH PROGRAM; HUMAN; INTERVIEW; LUNG BIOPSY; MALE; PATIENT CARE; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; QUALITY OF LIFE; QUESTIONNAIRE;

ADAPTATION, PSYCHOLOGICAL; AGED; ANALYSIS OF VARIANCE; ANXIETY; CAREGIVERS; DEPRESSION; DISEASE MANAGEMENT; DISEASE PROGRESSION; FEMALE; HEALTH STATUS INDICATORS; HUMANS; IDIOPATHIC PULMONARY FIBROSIS; MALE; PILOT PROJECTS; PROGRAM DEVELOPMENT; PROGRAM EVALUATION; PSYCHOMETRICS; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRES; RESPIRATORY FUNCTION TESTS; STRESS, PSYCHOLOGICAL; UNITED STATES;

EID: 77954296647     PISSN: 01479563     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.hrtlng.2009.08.005     Document Type: Article

References (61)

1. Raghu G. Interstitial lung diseases: a clinical overview and general approach. Fishman's pulmonary diseases and disorders 1998, 1037-1053. McGraw-Hill, New York. A. Fishman Elias, JA, J.A. Fishman, M.A. Grippi, L.R. Kaiser, R.M. Senior (Eds.).
2. Ryu J.H., Daniels C.E., Hartman T.E., Yi E.S. Diagnosis of interstitial lung diseases. Mayo Clin Proc 2007, 82. 976-86.
3. Hay J. Interstitial pulmonary fibrosis. Textbook of respiratory medicine 1988, 1079-1096. WB Saunders, Philadelphia. J.A. Murray, J.A. Nadel (Eds.).
4. Raghu G., Weycker D., Edelsberg J., Bradford W.Z., Oster G. Incidence and prevalence of idiopathic pulmonary fibrosis. Am J Respir Crit Care Med 2006, 174. 810-6.
5. King T.E. Clinical advances in the diagnosis and therapy of the interstitial lung diseases. Am J Respir Crit Care Med 2005, 172:268-279.
6. Idiopathic pulmonary fibrosis: diagnosis and treatment. International consensus statement. American Thoracic Society (ATS), and the European Respiratory Society (ERS). Am J Respir Crit Care Med 2000, 161(2 Pt 1):646-664. American Thoracic Society, American Thoracic Society.
7. This joint statement of the American Thoracic Society (ATS), and the European Respiratory Society (ERS) was adopted by the ATS board of directors, June 2001 and by the ERS Executive Committee, June 2001. Am J Respir Crit Care Med 2002, 165:277-304. American Thoracic Society/European Respiratory Society International Multidisciplinary Consensus Classification of the Idiopathic Interstitial Pneumonias.
8. Dauber J.H., Gibson K.F. Kaminski N. Interferon-gamma 1b in idiopathic pulmonary fibrosis: what we know and what must we learn. Am J Respir Crit Care Med 2004, 170:107-108.
9. Lindell K.O., Jacobs S.S. Idiopathic pulmonary fibrosis. Am J Nurs 2003, 103:32-42. quiz 43.
10. Selman M., Carrillo G., Estrada A., Mejia M., Becerril C., Cisneros J., et al. Accelerated variant of idiopathic pulmonary fibrosis: clinical behavior and gene expression pattern. PLoS ONE 2007, 2:e482.
11. Perez A., Rogers R.M., Dauber J.H. The prognosis of idiopathic pulmonary fibrosis. Am J Respir Cell Molec Biol 2003, 29(3 Suppl). S19-26.
12. Collard H.R., Moore B.B., Flaherty K.R., Brown K.K., Kaner R.J., King T.E., et al. Acute exacerbations of idiopathic pulmonary fibrosis. Am J Respir Crit Care Med 2007, 176:636-643.
13. Gibson K.F., Kaminski N. The mechanisms of idiopathic pulmonary fibrosis; can we see the elephant?. Drug Discov Today Dis Mech 2004, 1:117-122.
14. Lewis K.S. Emotional adjustment to a chronic illness. Lippincotts Prim Care Pract 1998, 2:38-51.
15. De Vries J., Kessels B.L., Drent M. Quality of life of idiopathic pulmonary fibrosis patients. Eur Respir J 2001, 17:954-961.
16. Roche V. The hidden patient: addressing the caregiver. Am J Med Sci 2009, 337:199-204.
17. Chang J.A., Curtis J.R., Patrick D.L., Raghu G. Assessment of health-related quality of life in patients with interstitial lung disease. Chest 1999, 116:1175-1182.
18. Martinez T.Y., Pereira C.A., dos Santos M.L., Ciconelli R.M., Guimaraes S.M., Martinez J.A. Evaluation of the short-form 36-item questionnaire to measure health-related quality of life in patients with idiopathic pulmonary fibrosis. Chest 2000, 117:1627-1632.
19. Clark M., Cooper B., Singh S., Cooper M., Carr A., Hubbard R. A survey of nocturnal hypoxaemia and health related quality of life in patients with cryptogenic fibrosing alveolitis. Thorax 2001, 56:482-486.
20. Jastrzebski D., Kozielski J., Banas A., Cebula T., Gumola A., Ziora D., Krzywiecki A. Quality of life during one-year observation of patients with idiopathic pulmonary fibrosis awaiting lung transplantation. J Physiol Pharmacol 2005, 56(Suppl 4):99-105.
21. Swigris J.J., Kuschner W.G., Jacobs S.S., Wilson S.R., Gould M.K. Health-related quality of life in patients with idiopathic pulmonary fibrosis: a systematic review. Thorax 2005, 60:588-594.
22. Swigris J.J., Gould M.K., Wilson S.R. Health-related quality of life among patients with idiopathic pulmonary fibrosis. Chest 2005, 127:284-294.
23. Lynn J., Goldstein N.E. Advance care planning for fatal chronic illness: avoiding commonplace errors and unwarranted suffering. Ann Intern Med 2003, 138:812-818.
24. Clinical Practice Guidelines for quality palliative care, executive summary. J Palliat Med 2004, 7:611-627. National Consensus Project for Quality Palliative Care.
25. Hansen-Flaschen J. Advanced lung disease. Palliation and terminal care. Clin Chest Med 1997, 18:645-655.
26. Olson A.L., Swigris J.J., Lezotte D.C., Norris J.M., Wilson C.G., Brown K.K. Mortality from pulmonary fibrosis increased in the United States from 1992 to 2003. Am J Respir Crit Care Med 2007, 176:277-284.
27. Pasacreta J., Minarik P.A., Nield-Anderson L. Anxiety and depression. Textbook of palliative nursing 2006, Oxford University Press, New York. 2nd ed. B.C. Ferrell, N. Coyle (Eds.).
28. Wingate B.J., Hansen-Flaschen J. Anxiety and depression in advanced lung disease. Clin Chest Med 1997, 18:495-505.
29. McSweeney A.J. Health status measurement in chronic obstructive pulmonary disease. Dis Mon 1995, 41:11-17.
30. Jones P.W. Health status measurement in chronic obstructive pulmonary disease. Thorax 2001, 56:880-887.
31. Swigris J.J., Stewart A.L., Gould M.K., Wilson S.R. Patients' perspectives on how idiopathic pulmonary fibrosis affects the quality of their lives. Health Qual Life Outcomes 2005, 3:61.
32. Nishiyama O., Taniguchi H., Kondoh Y., Kimura T., Ogawa T., Watanabe F., Nishimura K. Health-related quality of life in patients with idiopathic pulmonary fibrosis. What is the main contributing factor?. Respir Med 2005, 99:408-414.
33. Tomioka H., Imanaka K., Hashimoto K., Iwasaki H. Health-related quality of life in patients with idiopathic pulmonary fibrosis-cross-sectional and longitudinal study. Intern Med 2007, 46:1533-1542.
34. Krishnan V., McCormack M.C., Mathai S.C., Agarwal S., Richardson B., Horton, et al. Sleep quality and health-related quality of life in idiopathic pulmonary fibrosis. Chest 2008, 134:693-698.
35. Spiegel D., Bloom J.R., Yalom I. Group support for patients with metastatic cancer. A randomized outcome study. Arch Gen Psychiatry 1981, 38:527-533.
36. Connor S.R. Denial in terminal illness: to intervene or not to intervene. Hosp J 1992, 8:1-15.
37. Greenstein M., Breitbart W. Cancer and the experience of meaning: a group psychotherapy program for people with cancer. Am J Psychother 2000, 54:486-500.
38. Butler L.D., Koopman C., Cordova M.J., Garlan R.W., DiMiceli S., Spiegel D. Psychological distress and pain significantly increase before death in metastatic breast cancer patients. Psychosom Med 2003, 65:416-426.
39. Burns D. Feeling good: the new mood therapy 1999, Avon Books, New York.
40. Eakin E.G., Resnikoff P.M., Prewitt L.M., Ries A.L., Kaplan R.M. Validation of a new dyspnea measure: the UCSD Shortness of Breath Questionnaire 1998, 113. University of California, San Diego. Chest, 619-24.
41. Beck A.T., Epstein N., Brown G., Steer R.A. An inventory for measuring clinical anxiety: psychometric properties. J Consult Clin Psychol 1998, 56:893-897.
42. Fydrich T., Dowdall D., Chambless D.L. Reliability and validity of the Beck Anxiety Inventory. J Anxiety Disord 1992, 6:55-61.
43. Beck A.T., Epstein N., Brown G., Steer R.A. An inventory for measuring clinical anxiety: psychometric properties. J Consult Clin Psychol 1988, 56:893-897.
44. Beck A.T., Steer R.A., Brown G.K. Beck Depression Inventory manual 2002, The Psychological Corporation, Harcourt Brace and Company, New York. 2nd ed.
45. Richter P., Werner J., Heerlein A., Kraus A., Sauer H. On the validity of the Beck Depression Inventory. A review. Psychopathology 1998, 31:160-168.
46. Cohen S., Hoberman H. Positive events and social support as buffers of life change stress. J Appl Soc Psychol 1983, 13:99-125.
47. Farabaugh A.H., Mischoulon D., Fava M., Green C., Guyker W., Alpert J. The potential relationship between levels of perceived stress and subtypes of major depressive disorder (MDD). Acta Psychiatr Scand 2004, 110:465-470.
48. Golden-Kreutz D.M., Browne M.W., Frierson G.M., Andersen B.L. Assessing stress in cancer patients: a second-order factor analysis model for the Perceived Stress Scale. Assessment 2004, 11:216-223.
49. Chen C.H., Tseng Y.F., Chou F.H., Wang S.Y. Effects of support group intervention in postnatally distressed women. A controlled study in Taiwan. J Psychosom Res 2000, 49:395-399.
50. van Dulmen A.M., Fennis J.F., Bleijenberg G. Improved prognosis of functional abdominal complaints by attending to psychic factors. Ned Tijdschr Geneeskd 1998, 142:641-645.
51. Ware J.E., Kosinski M.A., Keller S.D. SF-36 Physical and Mental Health Summary scales: a user's manual. Boston, MA: The Health Institute. New England Medical Center 1994.
52. Boueri F.M., Bucher-Bartelson B.L., Glenn K.A., Make B.J. Quality of life measured with a generic instrument (Short Form-36) improves following pulmonary rehabilitation in patients with COPD. Chest 2001, 119:77-84.
53. Hansen-Flaschen J.H. Palliative home care for advanced lung disease. Respir Care 2000, 45:1478-1489.
54. Rubenfeld G.D., Curtis J.R. Palliative respiratory care. Respir Care 2000, 45:1318-1319.
55. Heffner J.E., Fahy B., Hilling L., Barbieri C. Attitudes regarding advance directives among patients in pulmonary rehabilitation. Am J Respir Crit Care Med 1996, 154(6 Pt 1):1735-1740.
56. Hopwood P., Stephens R.J. Depression in patients with lung cancer: prevalence and risk factors derived from quality-of-life data. J Clin Oncol 2000, 18:893-903.
57. Gitlin L.N., Belle S.H., Burgio L.D., Czaja S.J., Mahoney D., Gallagher-Thompson D. Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow-up. Psychol Aging 2003, 18:361-374.
58. Napolitano M.A., Babyak M.A., Palmer S., Tapson V., Davis R.D., Blumenthal J.A. Effects of a telephone-based psychosocial intervention for patients awaiting lung transplantation. Chest 2002, 122:1176-1184.
59. Lin E.H., Katon W., Von Korff M., Tang L., Williams J.W., Kroenke K. Effect of improving depression care on pain and functional outcomes among older adults with arthritis: a randomized controlled trial. JAMA 2003, 290:2428-2429.
60. Fava G.A., Ruini C., Rafanelli C., Grandi S. Cognitive behavior approach to loss of clinical effect during long-term antidepressant treatment: a pilot study. Am J Psychiatry 2002, 159:2094-2095.
61. Ciechanowski P., Wagner E., Schmaling K., Schwartz S., Williams B., Diehr P. Community-integrated home-based depression treatment in older adults: a randomized controlled trial. JAMA 2004, 291:1569-1577.