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Conceptualizing global health-related quality of life in bladder cancer |
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| Authors: | Nathan Perlis Murray Krahn Shabbir Alibhai Antonio Finelli Paul Ritvo Karen E. Bremner Girish Kulkarni |
| Affiliation: | 1. Division of Urology, Department of Surgical Oncology, Princess Margaret Hospital, University Health Network, University of Toronto, 610 University Avenue, 3-130, Toronto, ON, M5G 2M9, Canada 2. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada 3. Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada 4. Toronto General Research Institute, University Health Network, Toronto, ON, Canada 5. Institute of Medical Science, University of Toronto, Toronto, ON, Canada 6. School of Kinesiology and Health Science and the Department of Psychology, York University, Toronto, ON, Canada 7. Population Studies and Surveillance, Cancer Care Ontario, Toronto, ON, Canada 8. Institute for Clinical Evaluative Sciences, University of Toronto, Toronto, ON, Canada |
| Abstract: | PurposePatients’ 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.MethodsWe 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.ResultsWe 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).ConclusionsA 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. |
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