Issues for researchers to consider when using health-related quality of life outcomes in cancer research

European Journal of Cancer Care

Volumn 20, Issue 5, 2011, Pages 563-569

  Mccabe, C ^a   Cronin, P ^a  

^a TRINITY COLLEGE DUBLIN   (Ireland)

Author keywords

Cancer; Evaluation; Psychological; Quality of life

Indexed keywords

ARTICLE; HEALTH SERVICES RESEARCH; HEALTH STATUS; HUMAN; NEOPLASM; QUALITY OF LIFE;

HEALTH SERVICES RESEARCH; HEALTH STATUS; HUMANS; NEOPLASMS; QUALITY OF LIFE;

EID: 79960799330     PISSN: 09615423     EISSN: 13652354     Source Type: Journal    
DOI: 10.1111/j.1365-2354.2010.01229.x     Document Type: Article

References (82)

1. Affonso D., Liu-Chang C. & Mayberry L. (1999) Worry: conceptual dimensions and relevance to childbearing women. Health Care for Women International 20, 227-236.
2. Ahlberg K., Ekman T., Wallgren A. & Gaston-Johansson F. (2004) Fatigue, psychological distress, coping and quality of life in patients with uterine cancer. Journal of Advanced Nursing 45, 205-215.
3. Akizuki N., Akechi T., Nakanishi T., Yoshikawa E., Okaura M., Nakano T., Nurakami Y. & Uchitomi Y. (2003) Development of a brief screening interview for adjustment disorders and major depression in patients with cancer. Cancer 97, 2605-2613.
4. Akizuki N., Yamawaki S., Akechi T., Nakano T. & Uchitomi Y. (2005) Development of an Impact Thermometer for use in combination with the Distress Thermometer as a brief screening tool for adjustment disorders and/or major depression in cancer patients. Journal of Pain and Symptom Management 29, 91-99.
5. Anderson K. & Burckhardt C. (1999) Conceptualization and measurement of quality of life as an outcome variable for health care intervention and research. Journal of Advanced Nursing 29, 298-306.
6. Beal C. & Stuifbergen A. (2007) Loneliness in women with multiple sclerosis. Rehabilitation Nursing 32, 165-171.
7. Beck A., Steer R. & Brown G. (1996) Manual for the Beck Depression Inventory-II. Psychological Corporation, San Antonio, TX, USA.
8. Bottomley A. (1998) Anxiety and the adult cancer patient. European Journal of Cancer Care 7, 217-224.
9. Caplan K. (1987) Definitions and dimensions of quality of life. In: The Quality of Life of Cancer Patients (eds Aaronson N. & Beckmann J.), pp. 1-9. Raven Press, New York, USA.
10. Choenarom C., Williams R. & Hagerty B. (2005) The role of sense of belonging and social support on stress and depression in individuals with depression. Archives of Psychiatric Nursing 19, 18-29.
11. Coscarelli A., Balboni G. & Cubelli R. (2007) The problem of measuring socio-cultural level in psychological research. Advances in Learning and Behavioral Disabilities 20, 163-180.
12. Cunningham M. & Jillings C. (2006) Individuals' descriptions of living with fibromyalgia. Clinical Nursing Research 15, 258-273.
13. Dewar A. & Lee E. (2000) Bearing illness and injury. Western Journal of Nursing Research 22, 912-926.
14. Diener E., Emmons R., Larsen R. & Griffin S. (1985) The satisfaction with life scale. Journal of Personality Assessment 49, 71-75.
15. Dunn J., Lynch B., Rinaldis M., Pakenham K., McPherson L., Neville O., Leggett B., Newman B. & Aitken J. (2006) Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients. Psycho-Oncology 15, 20-30.
16. Farquhar M. (1995) Definitions of quality of life: a taxonomy. Journal of Advanced Nursing 22, 502-508.
17. Fife B.L., Huster G.A., Cornetta K.G., Kennedy V.N., Akard L.P. & Broun E.R. (2000) Longitudinal Study of Adaptation to the Stress of Bone Marrow Transplantation. Journal of. Clinical Oncology 18, 1539-1549.
18. Frick E., Borasio G., Zehentner H., Fischer N. & Bumeder I. (2004) Individual quality of life of patients undergoing autologous peripheral blood stem cell transplantation. Psycho-Oncology 13, 116-124.
19. Fridfinnsdottir E. (1997) Icelandic women's identifications of stressor and social support during the diagnostic phase of breast cancer. Journal of Advanced Nursing 25, 526-531.
20. Gallagher E.N. & Vella-Brodrick D.A. (2008) Social support and emotional intelligence as predictors of subjective well-being. Personality and Individual Differences 44, 1551-1561.
21. Gessler S., Low J., Daniells E., Williams R., Brough V., Tookman A. & Jones L. (2008) Screening for distress in cancer patients: is the distress thermometer a valid measure in the UK and does it measure change over time? A prospective validation study. Psycho-Oncology 17, 538-547.
22. Gliatto M. (2000) Generalized Anxiety Disorder. American Family Physician 62, 1591-1601.
23. Haas B. (1999) A multidisciplinary concept analysis of quality of life. Western Journal of Nursing Research 21, 728-742.
24. Hagerty B. & Williams A. (1999) The effects of sense of belonging, social support, conflict and loneliness on depression. Nursing Research 48, 215-219.
25. Hahn E.A., Cella D., Bode R.K. & Hanrahan R.T. (2010) Measuring social Well-Being in People with Chronic Illness. Social Indicators Research 96, 381.
26. Hansson B. & Ahlström G. (1999) Coping with chronic illness: a qualitative study of coping with postpolio syndrome. International Journal of Nursing Studies. 36, 255-262.
27. Haynes D. & Watt P. (2008) The lived experience of healthy behaviors in people with debilitating illness. Holistic Nursing Practice 22, 44-53.
28. Heikkilä J., Paunonen M., Virtanen V. & Laippala P. (1998) Fear of patients related to coronary arteriography. Journal of Advanced Nursing 28, 54-62.
29. Hickey A., Bury G., O'Boyle C., Bradley F., O'Kelly F. & Shannon W. (1996) A new short form individual quality of life measure (SIEQoL-DW): application in a cohort of individuals with HIV/AIDS. British Medical Journal 313, 29-33.
30. Hinson Langford C., Bowsher J., Moloney J. & Lillis P. (1997) Social support: a conceptual analysis. Journal of Advanced Nursing 25, 95-100.
31. Ho S.M.Y., Horne D.J. & Szer J. (2002) The adaptation of patients during the hospitalization period of bone marrow transplantation. Journal of Clinical Psychology in Medical Settings 9, 167-175.
32. Hoffman B., Zevon M., D'Arrigo M. & Cecchini T. (2004) Screening for distress in cancer patients: the NCCN rapid-screening measure. Psycho-Oncology 13, 792-799.
33. Kelly C., Ghazi F. & Caldwell K. (2002) Psychological distress of cancer and clinical trial participation: a review of the literature. European Journal of Cancer Care 11, 6-15.
34. Keogh F., O'Riordan J., McNamara C., Duggan S. & McCann S. (1998) Pshychosocial adjustment of patients and families following bone marrow transplantation: a prospective, longitudinal study. Bone Marrow Transplantation 22, 905-911.
35. King G., Cathers T., Brown E., Specht J., Willoughby C., Polgar J., Mackinnon E., Smith L. & Havens L. (2003) Turning points and protective processes in the lives of people with chronic disabilities. Qualitative Health Research 13, 184-206.
36. King G., Willoughby C., Specht J. & Brown E. (2006) Social support processes and the adaptation of individuals with chronic disabilities. Qualitative Health Research 16, 902-925.
37. Kyngäs H., Mikkonen R., Nousiainen E., Rytilahti M., Seppänen P., Vaattovaara R. & Jämsä T. (2001) Coping with the onset of cancer: coping strategies and resources of young people with cancer. European Journal of Cancer Care 10, 6-11.
38. Larsson G., Haglund K. & Von Essen L. (2003) Distress, quality of life and strategies to 'keep a good mood' in patients with carcinoid tumours: patient and staff perceptions. European Journal of Cancer Care 12, 46-57.
39. Lazarus R. & Folkman S. (1984) Stress Appraisal and Coping. Springer Publishing Company, New York, USA.
40. Lee S., Loberiza F., Antin J., Kirkpatrick T., Prokop L., Alyea E., Cutler C., Ho V., Richardson P., Schlossman R., Fisher D., Logan B. & Soiffer R. (2005) Routine screening for psychosocial distress following hemapoietic stem cell transplantation. Bone Marrow Transplantation 35, 77-83.
41. Lundman B. & Jansson L. (2007) The meaning of living with a long-term disease. To revalue and be revalued. Journal of Clinical Nursing 16, 109-115.
42. Luoma M. & Hakamies-Blomqvist L. (2004) The meaning of quality of life in patients being treated for advanced breast cancer: a qualitative study. Psycho-Oncology 13, 728-739.
43. Massie J. (2004) Prevalence of depression in patients with cancer. Journal of the National Cancer Institute Monographs 32, 57-71.
44. McCabe C., Begley C., Collier S. & McCann S. (2008) Methodological issues related to assessing and measuring quality of life in patients with cancer: implications for patient care. European Journal of Cancer Care 17, 56-64.
45. McCormick K., Naimark B. & Tate R. (2006) Uncertainty, symptom distress, anxiety and functional status in patients awaiting coronary artery bypass surgery. Heart Lung 35, 34-45.
46. Molassiotis A. (1996) Late psychosocial effects of conditioning for BMT. British Journal of Nursing 5, 1296-1302.
47. Monsivais D. (2005) Self-organization in chronic pain: a concept analysis. Rehabilitation Nursing 30, 147-151.
48. Montgomery C., Pocock M., Titley L. & Lloyd K. (2002) Individual quality of life in patients with leukaemia and lymphoma. Psycho-Oncology 11, 239-243.
49. Morris J. & Coyle D. (1994) Quality of life qustionnaires in cancer clinical trials: imputing missing values. Psycho-Oncology 3, 215-222.
50. Moussavi S., Chatterji S., Verdes E., Tandon A., Patel V. & Ustun B. (2007) Depression, chronic diseases, and decrements in health: results from the World Health Surveys. The Lancet 370, 851-858.
51. Murphy K., O'Shea E. & Cooney A. (2007) Quality of life for older people living in long-stay settings in Ireland. Journal of Clinical Nursing 16, 2167-2177.
52. Nagelkerk J., Reick K. & Meengs L. (2006) Perceived barriers and effective strategies to diabetes self-management. Journal of Advanced Nursing 54, 151-158.
53. National Comprehensive Cancer Network (NCCN) (2003) Distress management clinical practice guidelines. Journal of the National Comprehensive Cancer Network 1, 344-374.
54. Niv D. & Kreitler S. (2001) Pain and quality of life. Pain Practice 1, 150-161.
55. Osowiecki D.M. & Compas B.E. (1999) A prospective study of coping, perceived control, and psychological adaptation to breast cancer. Cognitive Therapy and Research 23, 169-180.
56. Parker P.A., Baile W.F., De Moor C. & Cohen L. (2003) Psychosocial and demographic predictors of quality of life in a large sample of cancer patients. Psycho-Oncology 12, 183-193.
57. Persson L. & Rydén A. (2006) Themes of effective coping in physical disability: an interview study of 26 persons who have learnt to live with their disability. Scandinavian Journal of Caring Science 20, 355-363.
58. Pieterse K., van Dooren S., Seynaeve C., Bartels C., Rijnsburger A., de Koning H., Klijn J., van Elderen T., Tibben A. & Duivenvoorden H. (2007) Passive coping and psychological distress in women adhering to regular breast cancer surveillance. Psycho-Oncology 16, 851-858.
59. Roth A., Kornblith A., Batel-Cooper L., Peabody E., Scher H. & Holland J. (1998) Rapid screening for psychologic distress in men with prostate carcinoma: a pilot study. Cancer 82, 1904-1908.
60. Schutte N., Malouff J., Hall L., Haggerty D., Cooper J., Golden C. & Dorheim L. (1998) Development and validation of a measure of emotional intelligence. Persoanlity and Individual Differences 25, 167-177.
61. Sellick S. & Crooks D. (1999) Depression and cancer: an appraisal of the literature for prevalence, detection and practice guideline development for psychological interventions. Psycho-Oncology 8, 315-333.
62. Sloan J. (2002) Asking the Obvious Questions Regarding Patient Burden. Journal of Clinical Oncology 20, 4-6.
63. Sloan J.A., Loprinzi C.L., Kuross S.A., Miser A.W., O'Fallon J.R., Mahoney M.R., Heid I.M., Bretscher M.E. & Vaught N.L. (1998) Randomized comparison of four tools measuring overall quality of life in patients with advanced cancer. Journal of Clinical Oncology 16, 3662-3673.
64. Sloman R. (2002) Relaxation and imagery for anxiety and depression control in community patients with advanced cancer. Cancer Nursing 25, 432-435.
65. Stearns V., Slack R., Greep N., Henry-Tilman R., Osborne M., Bunnell C., Ullmer L., Gallagher A., Cullen J., Gehan E., Hayes D. & Isaacs C. (2005) Paroxetine is an effective treatment for hot flashes: results from a prospective randomized clinical trial. Journal of Clinical Oncology 23, 6919-6930.
66. Stephens R.J., Hopwood P., Girling D.J. & Machin D. (1997) Randomized trials with quality of life endpoints: are doctors' ratings of patients' physical symptoms interchangeable with patients' self-ratings? Quality of Life Research 6, 225-236.
67. Taylor-Piliae R. & Molassiotis A. (2001) An exploration of the relationships between uncertainty, psychological distress and type of coping strategy among Chinese men after cardiac catheterization. Journal of Advanced Nursing 33, 79-88.
68. The EuroQoL Group (1990) EuroQol - a new facility for the measurement of health-related quality of life. Health Policy 16, 199-208.
69. Titzer M., Fisch M., Kristellar J. & Al E. (2001) Clinician's assessment of quality of life (QoL) in outpatients with advanced cancer: how accurate is our prediction? American Society of Clinical Oncology 20, 384.
70. Trask P., Paterson A., Riba M., Brines B., Griffith K., Parker P.A., Weick J., Steel P., Kyro K. & Ferrera J. (2002) Assessment of psychological distress in prospective bone marrow transplan patients. Bone Marrow Transplantation 29, 917-925.
71. Tsai P., Tak S., Moore C. & Palencia I. (2003) Testing a theory of chronic pain. Journal of Advanced Nursing 43, 158-169.
72. Wellard S. (1998) Constructions of chronic illness. International Journal of Nursing Studies 35, 49-55.
73. Wilkinson S., Love S., Westcombe A., Gambles M., Burgess C., Cargill A., Young T., Maher E. & Ramirez A. (2007) Effectiveness of aromatherapy massage in the management of anxiety and depression in patients with cancer: a multicenter randomized controlled triall. Journal of Clinical Oncology 25, 532-539.
74. World Health Organisation (1993) The ICD-10 Classification of Mental and Behavioural Disorders - Diagnostic Criteria for Research. World Health Organisation, Geneva, Switzerland.
75. Xuereb M. & Dunlop R. (2003) The experience of leukaemia and bone marrow transplant: searching for meaning and agency. Psycho-Oncology 12, 397-409.
76. Yu D., Lee D., Kwong A., Thompson D. & Woo J. (2008) Living with chronic heart failure: a review of qualitative studies of older people. Journal of Advanced Nursing 61, 474-483.
77. Zabora J., Blanchard C. & Smith E. (1997) Prevalence of psychosocial distress among cancer patients across the disease continuum. Journal of Psychosocial Oncology 15, 73-86.
78. Zabora J., BrintzenhofeSzoc K., Curbow B., Hooker C. & Piantadosi S. (2001) The prevalence of psychological distress by cancer site. Psycho-Oncology 10, 19-28.
79. Zigmond A. & Snaith R. (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavia 67, 361-370.
80. Zimet G.D., Dahlem N.W., Zimet S.G. & Farley G.K. (1988) The multidimensional scale of perceived social support. Journal of Personality Assessment 52, 30-41.
81. Zittoun R., Achard S. & Ruszniewski M. (1999) Assessment of quality of life dubing intensive chemotherapy or bone marrow transplantation. Psycho-Oncology 8, 64-73.
82. Zwahlen D., Hagenbuch N., Carley M., Recklitis C. & Buchi S. (2008) Screening cancer patients' families with the distress thermometer (DT): a validation study. Psycho-Oncology 17, 959-966.