Skip to main content
Top
Gepubliceerd in:

01-10-2014

Conceptualizing global health-related quality of life in bladder cancer

Auteurs: Nathan Perlis, Murray Krahn, Shabbir Alibhai, Antonio Finelli, Paul Ritvo, Karen E. Bremner, Girish Kulkarni

Gepubliceerd in: Quality of Life Research | Uitgave 8/2014

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

Patients’ values for health outcomes are central to treatment decisions in bladder cancer (BCa). An instrument incorporating the expressed preferences of BCa patients, as measured by utility, can inform clinical guidelines, resource allocation and policy decisions. Developing this instrument requires a formal conceptual framework summarizing the important domains comprising global health-related quality of life (HRQOL) in BCa.

Methods

We performed a systematic literature search on the HRQOL effects of BCa and its treatments to generate initial items in Medline, Embase, CINAHL and PsychInfo up to January 2013. Thematic synthesis was used to group related items into overarching themes (domains) and create a provisional conceptual framework. In focus groups, 12 BCa experts and 47 BCa patients with diverse clinical histories generated further items to inform the final conceptual framework.

Results

We retrieved 1,275 citations and reviewed 170 full-text publications. One hundred and sixty-nine items were extracted into 12 domains. Study investigators used the findings from the focus groups to confirm the domains and condense the list to 83 clinically important items. Functional limitations in work, travel, social interaction and sleep lowered HRQOL in many domains. The final conceptual framework included BCa-specific (urinary, sexual, bowel, body image) and generic domains (pain, vigor, social, psychological, sleep, functional, family relationship, medical care relationship).

Conclusions

A conceptual framework including 12 domains can serve as the foundation for the development of an instruments measuring global HRQOL in BCa and in particular, one that can measure patient preferences and generate utilities.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference Jemal, A., Bray, F., Centre, M., Ferlay, J., Ward, E., & Forman, D. (2011). Global cancer statistics. CA: A Cancer Journal for Clinicians, 61, 69–90. Jemal, A., Bray, F., Centre, M., Ferlay, J., Ward, E., & Forman, D. (2011). Global cancer statistics. CA: A Cancer Journal for Clinicians, 61, 69–90.
3.
go back to reference Efstathiou, J. A., Bae, K., Shipley, W. U., Kaufman, D. S., Hagan, M. P., Heney, N. M., et al. (2009). Late pelvic toxicity after bladder-sparing therapy in patients with invasive bladder cancer: RTOG 89-03, 95-06, 97-06, 99-06. Journal of Clinical Oncology, 27(25), 4055–4061. doi:10.1200/JCO.2008.19.5776.PubMedCentralPubMedCrossRef Efstathiou, J. A., Bae, K., Shipley, W. U., Kaufman, D. S., Hagan, M. P., Heney, N. M., et al. (2009). Late pelvic toxicity after bladder-sparing therapy in patients with invasive bladder cancer: RTOG 89-03, 95-06, 97-06, 99-06. Journal of Clinical Oncology, 27(25), 4055–4061. doi:10.​1200/​JCO.​2008.​19.​5776.PubMedCentralPubMedCrossRef
4.
go back to reference Grossman, H. B., Natale, R. B., Tangen, C. M., Speights, V. O., Vogelzang, N. J., Trump, D. L., et al. (2003). Neoadjuvant chemotherapy plus cystectomy compared with cystectomy alone for locally advanced bladder cancer. The New England Journal of Medicine, 349(9), 859–866. doi:10.1056/NEJMoa022148.PubMedCrossRef Grossman, H. B., Natale, R. B., Tangen, C. M., Speights, V. O., Vogelzang, N. J., Trump, D. L., et al. (2003). Neoadjuvant chemotherapy plus cystectomy compared with cystectomy alone for locally advanced bladder cancer. The New England Journal of Medicine, 349(9), 859–866. doi:10.​1056/​NEJMoa022148.PubMedCrossRef
5.
go back to reference Nieder, A. M., Brausi, M., Lamm, D., O’Donnell, M., Tomita, K., Woo, H., et al. (2005). Management of stage T1 tumors of the bladder: International Consensus Panel. Urology, 66(6), 108–125.PubMedCrossRef Nieder, A. M., Brausi, M., Lamm, D., O’Donnell, M., Tomita, K., Woo, H., et al. (2005). Management of stage T1 tumors of the bladder: International Consensus Panel. Urology, 66(6), 108–125.PubMedCrossRef
6.
go back to reference David, K. A., Milowsky, M. I., Ritchey, J., Carroll, P. R., & Nanus, D. M. (2007). Low incidence of perioperative chemotherapy for stage III bladder cancer 1998–2003: A report from the National Cancer Data Base. The Journal of Urology, 178(2), 451–454. doi:10.1016/j.juro.2007.03.101.PubMedCrossRef David, K. A., Milowsky, M. I., Ritchey, J., Carroll, P. R., & Nanus, D. M. (2007). Low incidence of perioperative chemotherapy for stage III bladder cancer 1998–2003: A report from the National Cancer Data Base. The Journal of Urology, 178(2), 451–454. doi:10.​1016/​j.​juro.​2007.​03.​101.PubMedCrossRef
7.
go back to reference Drummond, M. F., Sculpher, M. J., Torrance, G. W., O’Brien, B. J., & Stoddart, G. L. (2005). Methods for the economic evaluation of health care programmes (3rd ed., p. 379). Oxford: Oxford University Press. Drummond, M. F., Sculpher, M. J., Torrance, G. W., O’Brien, B. J., & Stoddart, G. L. (2005). Methods for the economic evaluation of health care programmes (3rd ed., p. 379). Oxford: Oxford University Press.
8.
go back to reference Froberg, D. G., & Kane, R. L. (1989). Methodology for measuring health-state preferences—I: Measurement strategies. Journal of Clinical Epidemiology, 42(4), 345–354.PubMedCrossRef Froberg, D. G., & Kane, R. L. (1989). Methodology for measuring health-state preferences—I: Measurement strategies. Journal of Clinical Epidemiology, 42(4), 345–354.PubMedCrossRef
9.
go back to reference Torrance, G., & Feeny, D. (1989). Utilities and quality-adjusted life years. International Journal of Technology Assessment in Health, 5, 559–575.CrossRef Torrance, G., & Feeny, D. (1989). Utilities and quality-adjusted life years. International Journal of Technology Assessment in Health, 5, 559–575.CrossRef
10.
go back to reference Blinman, P., King, M., Norman, R., Viney, R., & Stockler, M. R. (2012). Preferences for cancer treatments: An overview of methods and applications in oncology. Annals of Oncology, 23(5), 1104–1110. doi:10.1093/annonc/mdr559.PubMedCrossRef Blinman, P., King, M., Norman, R., Viney, R., & Stockler, M. R. (2012). Preferences for cancer treatments: An overview of methods and applications in oncology. Annals of Oncology, 23(5), 1104–1110. doi:10.​1093/​annonc/​mdr559.PubMedCrossRef
11.
go back to reference Gacci, M., Saleh, O., Cai, T., Gore, J. L., D’Elia, C., Minervini, A., et al. (2013). Quality of life in women undergoing urinary diversion for bladder cancer: Results of a multicenter study among long-term disease-free survivors. Health and Quality of Life Outcomes, 11(1), 43. doi:10.1186/1477-7525-11-43.PubMedCentralPubMedCrossRef Gacci, M., Saleh, O., Cai, T., Gore, J. L., D’Elia, C., Minervini, A., et al. (2013). Quality of life in women undergoing urinary diversion for bladder cancer: Results of a multicenter study among long-term disease-free survivors. Health and Quality of Life Outcomes, 11(1), 43. doi:10.​1186/​1477-7525-11-43.PubMedCentralPubMedCrossRef
12.
go back to reference Froberg, D. G., & Kane, R. L. (1989). Methodology for measuring health-state preferences—II: Scaling methods. Journal of Clinical Epidemiology, 42(5), 459–471.PubMedCrossRef Froberg, D. G., & Kane, R. L. (1989). Methodology for measuring health-state preferences—II: Scaling methods. Journal of Clinical Epidemiology, 42(5), 459–471.PubMedCrossRef
13.
go back to reference Dolan, P., Gudex, C., Kind, P., & Williams, A. (1995). A social tariff for EuroQol: Results from a UK general population survey (No. Discussion paper 138). Dolan, P., Gudex, C., Kind, P., & Williams, A. (1995). A social tariff for EuroQol: Results from a UK general population survey (No. Discussion paper 138).
14.
go back to reference Tomlinson, G., Bremner, K. E., Ritvo, P., Naglie, G., & Krahn, M. D. (2012). Development and validation of a utility weighting function for the patient-oriented prostate utility scale (PORPUS). Medical Decision Making, 32(1), 11–30. doi:10.1177/0272989X11407203.PubMedCrossRef Tomlinson, G., Bremner, K. E., Ritvo, P., Naglie, G., & Krahn, M. D. (2012). Development and validation of a utility weighting function for the patient-oriented prostate utility scale (PORPUS). Medical Decision Making, 32(1), 11–30. doi:10.​1177/​0272989X11407203​.PubMedCrossRef
15.
go back to reference Programme on Mental Health—WHOQOL Measuring Quality of Life. (1997). World health (pp. 1–13). Geneva, Switzerland. Programme on Mental Health—WHOQOL Measuring Quality of Life. (1997). World health (pp. 1–13). Geneva, Switzerland.
16.
17.
go back to reference Krahn, M., Ritvo, P., Irvine, J., Tomlinson, G., Bezjak, A., Trachtenberg, J., et al. (2000). Construction of the patient-oriented prostate utility scale (PORPUS): A multiattribute health state classification system for prostate cancer. Journal of Clinical Epidemiology, 53(9), 920–930.PubMedCrossRef Krahn, M., Ritvo, P., Irvine, J., Tomlinson, G., Bezjak, A., Trachtenberg, J., et al. (2000). Construction of the patient-oriented prostate utility scale (PORPUS): A multiattribute health state classification system for prostate cancer. Journal of Clinical Epidemiology, 53(9), 920–930.PubMedCrossRef
18.
go back to reference Aaronson, N. K., Calais da Silva, F., Yoshida, O., van Dam, F. S., Fossa, S. D., Miyakawa, M., et al. (1986). Quality of life assessment in bladder cancer clinical trials: Conceptual, methodological and practical issues. Progress in Clinical and Biological Research, 221, 149–170.PubMed Aaronson, N. K., Calais da Silva, F., Yoshida, O., van Dam, F. S., Fossa, S. D., Miyakawa, M., et al. (1986). Quality of life assessment in bladder cancer clinical trials: Conceptual, methodological and practical issues. Progress in Clinical and Biological Research, 221, 149–170.PubMed
19.
go back to reference Mansson, A., Johnson, G., & Mansson, W. (1988). Quality of life after cystectomy comparison between patients with conduit and those with continent caecal reservoir urinary diversion. British Journal of Urology, 62(3), 240–245.PubMedCrossRef Mansson, A., Johnson, G., & Mansson, W. (1988). Quality of life after cystectomy comparison between patients with conduit and those with continent caecal reservoir urinary diversion. British Journal of Urology, 62(3), 240–245.PubMedCrossRef
20.
go back to reference Faithfull, S. (1995). “Just grin and bear it and hope that it will go away”: Coping with urinary symptoms from pelvic radiotherapy. European journal of cancer care, 4(4), 158–165.PubMedCrossRef Faithfull, S. (1995). “Just grin and bear it and hope that it will go away”: Coping with urinary symptoms from pelvic radiotherapy. European journal of cancer care, 4(4), 158–165.PubMedCrossRef
21.
go back to reference Henningsohn, L., Wijkstrom, H., Steven, K., Pedersen, J., Ahlstrand, C., Aus, G., et al. (2003). Relative importance of sources of symptom-induced distress in urinary bladder cancer survivors. European Urology, 43(6), 651–662.PubMedCrossRef Henningsohn, L., Wijkstrom, H., Steven, K., Pedersen, J., Ahlstrand, C., Aus, G., et al. (2003). Relative importance of sources of symptom-induced distress in urinary bladder cancer survivors. European Urology, 43(6), 651–662.PubMedCrossRef
22.
go back to reference Gilbert, S. M., Dunn, R. L., Hollenbeck, B. K., Montie, J. E., Lee, C. T., Wood, D. P., et al. (2010). Development and validation of the Bladder Cancer Index: A comprehensive, disease specific measure of health related quality of life in patients with localized bladder cancer. The Journal of Urology, 183(5), 1764–1769.PubMedCrossRef Gilbert, S. M., Dunn, R. L., Hollenbeck, B. K., Montie, J. E., Lee, C. T., Wood, D. P., et al. (2010). Development and validation of the Bladder Cancer Index: A comprehensive, disease specific measure of health related quality of life in patients with localized bladder cancer. The Journal of Urology, 183(5), 1764–1769.PubMedCrossRef
23.
go back to reference Fellin, G., Graffer, U., Bolner, A., Ambrosini, G., Caffo, O., & Luciani, L. (1997). Combined chemotherapy and radiation with selective organ preservation for muscle-invasive bladder carcinoma. A single-institution phase II study. British Journal of Urology, 80(1), 44–49.PubMedCrossRef Fellin, G., Graffer, U., Bolner, A., Ambrosini, G., Caffo, O., & Luciani, L. (1997). Combined chemotherapy and radiation with selective organ preservation for muscle-invasive bladder carcinoma. A single-institution phase II study. British Journal of Urology, 80(1), 44–49.PubMedCrossRef
24.
go back to reference Roychowdhury, D. F., Hayden, A., & Liepa, A. M. (2003). Health-related quality-of-life parameters as independent prognostic factors in advanced or metastatic bladder cancer. Journal of Clinical Oncology, 21(4), 673–678.PubMedCrossRef Roychowdhury, D. F., Hayden, A., & Liepa, A. M. (2003). Health-related quality-of-life parameters as independent prognostic factors in advanced or metastatic bladder cancer. Journal of Clinical Oncology, 21(4), 673–678.PubMedCrossRef
25.
go back to reference Palapattu, G. S., Haisfield-Wolfe, M. E., Walker, J. M., BrintzenhofeSzoc, K., Trock, B., Zabora, J., et al. (2004). Assessment of perioperative psychological distress in patients undergoing radical cystectomy for bladder cancer. The Journal of Urology, 172(5 Pt 1), 1814–1817.PubMedCrossRef Palapattu, G. S., Haisfield-Wolfe, M. E., Walker, J. M., BrintzenhofeSzoc, K., Trock, B., Zabora, J., et al. (2004). Assessment of perioperative psychological distress in patients undergoing radical cystectomy for bladder cancer. The Journal of Urology, 172(5 Pt 1), 1814–1817.PubMedCrossRef
26.
go back to reference Biermann, C. W., Schmidt, C., & Kuchler, T. (1995). Development of a life quality questionnaire in bladder cancer surgery. British Journal of Urology, 76(3), 412–413.PubMed Biermann, C. W., Schmidt, C., & Kuchler, T. (1995). Development of a life quality questionnaire in bladder cancer surgery. British Journal of Urology, 76(3), 412–413.PubMed
27.
go back to reference Thulin, H., Kreicbergs, U., Wijkstrom, H., Steineck, G., & Henningsohn, L. (2010). Sleep disturbances decrease self-assessed quality of life in individuals who have undergone cystectomy. The Journal of Urology, 184(1), 198–202.PubMedCrossRef Thulin, H., Kreicbergs, U., Wijkstrom, H., Steineck, G., & Henningsohn, L. (2010). Sleep disturbances decrease self-assessed quality of life in individuals who have undergone cystectomy. The Journal of Urology, 184(1), 198–202.PubMedCrossRef
28.
go back to reference Nordstrom, G., Nyman, C. R., & Theorell, T. (1992). Psychosocial adjustment and general state of health in patients with ileal conduit urinary diversion. Scandinavian Journal of Urology and Nephrology, 26(2), 139–147.PubMed Nordstrom, G., Nyman, C. R., & Theorell, T. (1992). Psychosocial adjustment and general state of health in patients with ileal conduit urinary diversion. Scandinavian Journal of Urology and Nephrology, 26(2), 139–147.PubMed
29.
go back to reference Sengelov, L., Frolich, S., Kamby, C., Jensen, N. H., & Steven, K. (2000). The functional and psychosocial status of patients with disseminated bladder cancer. Urologic Oncology, 5(1), 20–24.PubMedCrossRef Sengelov, L., Frolich, S., Kamby, C., Jensen, N. H., & Steven, K. (2000). The functional and psychosocial status of patients with disseminated bladder cancer. Urologic Oncology, 5(1), 20–24.PubMedCrossRef
30.
go back to reference Kitamura, H., Miyao, N., Yanase, M., Masumori, N., Matsukawa, M., Takahashi, A., et al. (1999). Quality of life in patients having an ileal conduit, continent reservoir or orthotopic neobladder after cystectomy for bladder carcinoma. International Journal of Urology, 6(8), 393–399.PubMedCrossRef Kitamura, H., Miyao, N., Yanase, M., Masumori, N., Matsukawa, M., Takahashi, A., et al. (1999). Quality of life in patients having an ileal conduit, continent reservoir or orthotopic neobladder after cystectomy for bladder carcinoma. International Journal of Urology, 6(8), 393–399.PubMedCrossRef
31.
go back to reference Rabow, M., Evans, C., Weinberg, V., & Miller, B. (2011). Symptom burden for patients with bladder cancer and their family caregivers: Preliminary results (753). Journal of Pain and Symptom Management, 41(1), 304–305.CrossRef Rabow, M., Evans, C., Weinberg, V., & Miller, B. (2011). Symptom burden for patients with bladder cancer and their family caregivers: Preliminary results (753). Journal of Pain and Symptom Management, 41(1), 304–305.CrossRef
32.
go back to reference Colwell, J. C. (2005). Dealing with ostomies: Good care, good devices, good quality of life. The Journal of Supportive Oncology, 3(1), 72–74.PubMed Colwell, J. C. (2005). Dealing with ostomies: Good care, good devices, good quality of life. The Journal of Supportive Oncology, 3(1), 72–74.PubMed
33.
go back to reference Botteman, M. F., Pashos, C. L., Redaelli, A., Laskin, B., & Hauser, R. (2003). The health economics of bladder cancer: A comprehensive review of the published literature. Pharmacoeconomics, 21(18), 1315–1330.PubMedCrossRef Botteman, M. F., Pashos, C. L., Redaelli, A., Laskin, B., & Hauser, R. (2003). The health economics of bladder cancer: A comprehensive review of the published literature. Pharmacoeconomics, 21(18), 1315–1330.PubMedCrossRef
34.
go back to reference Gilbert, S. M., Wood, D. P., Dunn, R. L., Weizer, A. Z., Lee, C. T., Montie, J. E., et al. (2007). Measuring health-related quality of life outcomes in bladder cancer patients using the Bladder Cancer Index (BCI). Cancer, 109(9), 1756–1762. doi:10.1002/cncr.22556.PubMedCrossRef Gilbert, S. M., Wood, D. P., Dunn, R. L., Weizer, A. Z., Lee, C. T., Montie, J. E., et al. (2007). Measuring health-related quality of life outcomes in bladder cancer patients using the Bladder Cancer Index (BCI). Cancer, 109(9), 1756–1762. doi:10.​1002/​cncr.​22556.PubMedCrossRef
35.
go back to reference Cookson, M. S., Dutta, S. C., Chang, S. S., Clark, T., Smith, J. A. J., & Wells, N. (2003). Health related quality of life in patients treated with radical cystectomy and urinary diversion for urothelial carcinoma of the bladder: Development and validation of a new disease specific questionnaire. The Journal of Urology, 170(5), 1926–1930.PubMedCrossRef Cookson, M. S., Dutta, S. C., Chang, S. S., Clark, T., Smith, J. A. J., & Wells, N. (2003). Health related quality of life in patients treated with radical cystectomy and urinary diversion for urothelial carcinoma of the bladder: Development and validation of a new disease specific questionnaire. The Journal of Urology, 170(5), 1926–1930.PubMedCrossRef
36.
go back to reference Jefford, M., Karahalios, E., Pollard, A., Baravelli, C., Carey, M., Franklin, J., et al. (2008). Survivorship issues following treatment completion–results from focus groups with Australian cancer survivors and health professionals. Journal of Cancer Survivorship: Research and Practice, 2(1), 20–32. doi:10.1007/s11764-008-0043-4.CrossRef Jefford, M., Karahalios, E., Pollard, A., Baravelli, C., Carey, M., Franklin, J., et al. (2008). Survivorship issues following treatment completion–results from focus groups with Australian cancer survivors and health professionals. Journal of Cancer Survivorship: Research and Practice, 2(1), 20–32. doi:10.​1007/​s11764-008-0043-4.CrossRef
37.
go back to reference Helman, C. G. (1995). The body image in health and disease: Exploring patients’ maps of body and self. Patient Education and Counseling, 26, 169–175.PubMedCrossRef Helman, C. G. (1995). The body image in health and disease: Exploring patients’ maps of body and self. Patient Education and Counseling, 26, 169–175.PubMedCrossRef
38.
go back to reference Mechanic, D. (2004). In my chosen doctor i trust: And that trust transfers from doctors to organisations. British Medical Journal, 329(7480), 1418–1419.PubMedCentralPubMedCrossRef Mechanic, D. (2004). In my chosen doctor i trust: And that trust transfers from doctors to organisations. British Medical Journal, 329(7480), 1418–1419.PubMedCentralPubMedCrossRef
39.
Metagegevens
Titel
Conceptualizing global health-related quality of life in bladder cancer
Auteurs
Nathan Perlis
Murray Krahn
Shabbir Alibhai
Antonio Finelli
Paul Ritvo
Karen E. Bremner
Girish Kulkarni
Publicatiedatum
01-10-2014
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 8/2014
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-014-0685-9