title: Conceptualizing global health-related quality of life in bladder cancer.
abstract: OBJECTIVE
  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.
authors.affiliation: 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, nathan.perlis@gmail.com.
authors.forename: Nathan
authors.initials: N
authors.lastname: Perlis
authors.forename: Murray
authors.initials: M
authors.lastname: Krahn
authors.forename: Shabbir
authors.initials: S
authors.lastname: Alibhai
authors.forename: Antonio
authors.initials: A
authors.lastname: Finelli
authors.forename: Paul
authors.initials: P
authors.lastname: Ritvo
authors.forename: Karen E
authors.initials: KE
authors.lastname: Bremner
authors.forename: Girish
authors.initials: G
authors.lastname: Kulkarni
mesh_terms: D000368:Aged; D005260:Female; D017144:Focus Groups; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D011788:Quality of Life; D001749:Urinary Bladder Neoplasms / Q000503:physiopathology* / Q000523:psychology*
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