A mixed methods approach to adapting health-related quality of life measures for use in routine oncology clinical practice

Quality of Life Research

Volumn 21, Issue 3, 2012, Pages 389-403

  Harley, Clare ^a   Takeuchi, Elena ^a   Taylor, Sally ^a   Keding, Ada ^a   Absolom, Kate ^a   Brown, Julia ^a   Velikova, Galina ^a  

^a UNIVERSITY OF LEEDS   (United Kingdom)

Author keywords

Cancer; Clinical practice; Patient reported outcomes; Questionnaire design

Indexed keywords

ANTINEOPLASTIC AGENT;

ARTICLE; BREAST TUMOR; COLORECTAL TUMOR; DAILY LIFE ACTIVITY; FEMALE; FEMALE GENITAL TRACT TUMOR; HUMAN; INTERVIEW; MALE; METHODOLOGY; MIDDLE AGED; ONCOLOGY; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRE; REPRODUCIBILITY; STANDARD; STATISTICAL ANALYSIS;

ACTIVITIES OF DAILY LIVING; ANTINEOPLASTIC AGENTS; BREAST NEOPLASMS; COLORECTAL NEOPLASMS; DATA INTERPRETATION, STATISTICAL; FEMALE; GENITAL NEOPLASMS, FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; MEDICAL ONCOLOGY; MIDDLE AGED; PSYCHOMETRICS; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS; RESEARCH DESIGN;

EID: 84863634475     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-011-9983-7     Document Type: Review

References (38)

1. Cancer Research UK. (2010). Trends in cancer mortality-UK statistics. Retrieved March 25, 2011 from http://info.cancer researchuk.org/cancerstats/ mortality/timetrends/.
2. Improving supportive and palliative care for adults with cancer: The manual. (2004). National Institute of Clinical Excellence.
3. Improving Outcomes: A Strategy for Cancer. (2011). Department of Health.
4. Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. The Journal of the American Medical Association, 273(1), 59-65.
5. Boyes, A., Newell, S., Girgis, A., McElduff, P., & Sanson-Fisher, R. (2006). Does routine assessment and real-time feedback improve cancer patients' psychosocial well-being? European Journal of Cancer Care (Engl), 15(2), 163-171. (Pubitemid 43542758)
6. Detmar, S. B., Muller, M. J., Schornagel, J. H., Wever, L. D., & Aaronson, N. K. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. The Journal of American Medical Association, 288(23), 3027-3034. (Pubitemid 35471165)
7. Velikova, G., Booth, L., Smith, A. B., Brown, P. M., Lynch, P., Brown, J. M., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient wellbeing: A randomized controlled trial. Journal of Clinical Oncology, 22(4), 714-724. (Pubitemid 41095076)
8. Taenzer, P., Bultz, B. D., Carlson, L. E., Speca, M., DeGagne, T., Olson, K., et al. (2000). Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients. Psycho-oncology, 9(3), 203-213. (Pubitemid 30392195)
9. Morris, J., Perez, D., & McNoe, B. (1998). The use of quality of life data in clinical practice. Quality of Life Research, 7(1), 85-91. (Pubitemid 28113968)
10. Velikova, G., Awad, N., Coles-Gale, R., Wright, E. P., Brown, J. M., & Selby, P. J. (2008). The clinical value of quality of life assessment in oncology practice-a qualitative study of patient and physician views. Psycho-Oncology, 17(7), 690-698.
11. Snyder, C. F., Jensen, R. E., Geller, G., Carducci, M. A., & Wu, A. W. (2010). Relevant content for a patient-reported outcomes questionnaire for use in oncology clinical practice: Putting doctors and patients on the same page. Quality of Life Research, 19(7), 1045-1055.
12. Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science and Medicine, 60(4), 833-843. (Pubitemid 39574779)
13. Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of National Cancer Institute, 85(5), 365-376. (Pubitemid 23073154)
14. Cella, D. F., Tulsky, D. S., Gray, G., Sarafian, B., Linn, E., Bonomi, A., et al. (1993). The functional assessment of cancer therapy scale: Development and validation of the general measure. Journal of Clinical Oncology, 11(3), 570-579. (Pubitemid 23071057)
15. Arnould, B. (2006). Patient-reported outcomes in clinical practice. From measurement instruments to decision tools: Much more than a simple change in format. Patient Reported Outcomes Newsletter, 36, 21-24.
16. Blazeby, J., Sprangers, M., Cull, A., Groenvold, M., & Bottomley, A. (2002). Guidelines for developing questionnaire modules: EORTC quality of life group. Brussels: EORTC.
17. Velikova, G., Sheppard, S., Campbell, L., Smith, A., Awad, N., Selby, P., et al. (2008). Randomized trial of quality-of-life measurement in oncology practice: Do oncologists need to know? ASCO annual meeting proceedings (post-meeting edition) Journal of Clinical Oncology. 26, 9586.
18. Taylor, S., Harley, C., Campbell, L. J., Bingham, L., Podmore, E. J., Newsham, A. C., et al. (2011). Discussion of emotional and social impact of cancer during outpatient oncology consultations. Psycho-Oncology, 20(3), 242-251.
19. Fagerlind, H., Lindblad, A. K., Bergstrom, I., Nilsson, M., Naucler, G., Glimelius, B., et al. (2008). Patient-physician communication during oncology consultations. Psycho-Oncology, 17(10), 975-985.
20. Bottomley, A., Vachalec, S., Bjordal, K., Blazeby, J., Flechtner, H., & Ruyskart, P. (2002). The development and utilisation of the European Organisation for research and treatment of cancer quality of life group item bank. European Journal of Cancer, 38(12), 1611-1614. (Pubitemid 34876500)
21. Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361-370. (Pubitemid 13098606)
22. Feinstein, A. R. (1983). An additional basic science for clinical medicine: IV. The development of clinimetrics. Annals of Internal Medicine, 99(6), 843-848. (Pubitemid 14248416)
23. Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16(3), 297-334.
24. Cortina, J. M. (1993). What is coefficient alpha? An examination of theory and applications. Journal of Applied Psychology, 78(1), 98-104.
25. Ware, J. E., Harris, W. J., Gandek, B., Rogers, B. W., & Reese, P. R. (1997). MAP-R for windows: Multitrait/Multi-item analysis program-revised user's guide. Boston, MA: Health Assessment Lab.
26. Snaith, R. P., & Zigmond, A. S. (1994). The hospital anxiety and depression scale manual. Windsor: NFER-Nelson.
27. Bonferroni, C. E. (1936). Teoria statistica delle classi e calcolo delle probabilità. Pubblicazioni del Regio Istituto Superiore di Scienze Economiche e Commerciali di Firenze, 8, 3-62.
28. Greimel, E., Bottomley, A., Cull, A., Waldenstrom, A. C., Arraras, J., Chauvenet, L., et al. (2003). An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-OV28) in assessing the quality of life of patients with ovarian cancer. European Journal of Cancer, 39(10), 1402-1408. (Pubitemid 36773783)
29. Sprangers, M. A., Groenvold, M., Arraras, J. I., Franklin, J., te Velde, A., Muller, M., et al. (1996). The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: First results from a threecountry field study. Journal of Clinical Oncology, 14(10), 2756-2768. (Pubitemid 26329662)
30. Sprangers, M. A., te Velde, A., & Aaronson, N. K. (1999). The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). European Organization for Research and Treatment of Cancer study group on quality of life. European Journal of Cancer, 35(2), 238-247. (Pubitemid 29136774)
31. Blazeby, J. M., Fayers, P., Conroy, T., Sezer, O., Ramage, J., & Rees, M. (2009). Validation of the European Organization for Research and Treatment of Cancer QLQ-LMC21 questionnaire for assessment of patient-reported outcomes during treatment of colorectal liver metastases. British Journal of Surgery, 96(3), 291-298.
32. de Haes, J. C., van Knippenberg, F. C., & Neijt, J. P. (1990). Measuring psychological and physical distress in cancer patients: Structure and application of the Rotterdam symptom checklist. British Journal of Cancer, 62(6), 1034-1038.
33. Oken, M. M., Creech, R. H., Tormey, D. C., Horton, J., Davis, T. E., McFadden, E. T., et al. (1982). Toxicity and response criteria of the eastern cooperative oncology group. American Journal of Clinical Oncology, 5(6), 649-655. (Pubitemid 13149996)
34. Ward, W. L., Hahn, E. A., Mo, F., Hernandez, L., Tulsky, D. S., & Cella, D. (1999). Reliability and validity of the functional assessment of cancer therapy-colorectal (FACT-C) quality of life instrument. Quality of Life Research, 8(3), 181-195. (Pubitemid 29367288)
35. Berwick, D. M., Murphy, J. M., Goldman, P. A., Ware, J. E., Jr., Barsky, A. J., & Weinstein, M. C. (1991). Performance of a fiveitem mental health screening test. Medical Care, 29(2), 169-176.
36. Cull, A., Gould, A., House, A., Smith, A., Strong, V., Velikova, G., et al. (2001). Validating automated screening for psychological distress by means of computer touchscreens for use in routine oncology practice. British Journal of Cancer, 85(12), 1842-1849. (Pubitemid 34775319)
37. Tabacknick, B., & Fidell, L. (2007). Using multivariate statistics (5th ed.). Boston: Pearson Education.
38. Cull, A. M. (1992). The assessment of sexual function in cancer patients. European Journal of Cancer, 28 A (10), 1680-1686.