title: Pursuing Quality in the Application of Bladder Cancer Quality of Life Research.
abstract: Patient-reported outcomes (PRO), including health-related quality of life (HRQOL) measures, represent important means for evaluating patients' health outcomes and for guiding health care decisions made by patients, practitioners, investigators, and policy makers. In spite of the large number of studies examining HRQOL in patients with bladder cancer, very few review articles investigated this topic. Because these review studies report mixed results, incorporating bladder cancer HRQOL measures into standard urological practice is not a viable option. In this non-systematic review of the literature and commentary we note some general concerns regarding PRO research, but our primary focus is on the HRQOL methodology within the context of two types of bladder cancer: muscle invasive and non-muscle invasive bladder cancer. Considering bladder cancer HRQOL as the interaction of four areas of the assessment process (i.e., what model of HRQOL to choose, what instruments are available to fit the choice, how interpretation of the resulting data fits the model, and how to derive some utility from the chosen model) and the two types of disease (i.e., muscle invasive and non-muscle invasive) may move us toward a better understanding of bladder cancer HRQOL. Establishing a useful model of perceived general health or specific symptoms is the first and most important step in developing the responsive bladder cancer HRQOL measures necessitated by clinical settings.
authors.affiliation: Department of Urology, Icahn School of Medicine at Mount Sinai , New York, NY, USA.
authors.forename: N E
authors.initials: NE
authors.lastname: Mohamed
authors.affiliation: Unaffiliated.
authors.forename: F
authors.initials: F
authors.lastname: Gilbert
authors.affiliation: Department of Urology, University of Michigan , Ann Arbor, MI, USA.
authors.forename: C T
authors.initials: CT
authors.lastname: Lee
authors.affiliation: Department of Urology, Icahn School of Medicine at Mount Sinai , New York, NY, USA.
authors.forename: J
authors.initials: J
authors.lastname: Sfakianos
authors.affiliation: Department of Urology, Icahn School of Medicine at Mount Sinai , New York, NY, USA.
authors.forename: C
authors.initials: C
authors.lastname: Knauer
authors.affiliation: Department of Urology, Icahn School of Medicine at Mount Sinai , New York, NY, USA.
authors.forename: R
authors.initials: R
authors.lastname: Mehrazin
authors.affiliation: Department of Oncological Sciences, Icahn School of Medicine at Mount Sinai , New York, NY, USA.
authors.forename: H
authors.initials: H
authors.lastname: Badr
authors.affiliation: Unaffiliated.
authors.forename: D
authors.initials: D
authors.lastname: Wittmann
authors.affiliation: Department of Urology, University of Wisconsin , Madison, WI, USA.
authors.forename: T
authors.initials: T
authors.lastname: Downs
authors.affiliation: Dana-Farber Cancer Institute , Boston, MA, USA.
authors.forename: D
authors.initials: D
authors.lastname: Berry
authors.affiliation: Department of Medicine, Harvard Medical School, Dana-Farber Cancer Institute , Boston, MA, USA.
authors.forename: B
authors.initials: B
authors.lastname: Given
authors.affiliation: Department of Urology, Icahn School of Medicine at Mount Sinai , New York, NY, USA.
authors.forename: P
authors.initials: P
authors.lastname: Wiklund
authors.affiliation: Division of Clinical Cancer Epidemiology, Sahlgrenska universitetssjukhuset , Göteborg, Sweden.
authors.forename: G
authors.initials: G
authors.lastname: Steineck
keywords: Patient-reported outcomes; bladder cancer; conceptual model of quality of life; design and development of bladder cancer quality of life measures; health-related quality of life; muscle invasive bladder cancer; non-muscle invasive bladder cancer; quality of life assessments