The Bladder Utility Symptom Scale: A Novel Patient Reported Outcome Instrument for Bladder Cancer

Nathan Perlis; Murray D Krahn; Kirstin E Boehme; Shabbir M H Alibhai; Munir Jamal; Antonio Finelli; Srikala S Sridhar; Peter Chung; Rushi Gandhi; Jennifer Jones; George Tomlinson; Karen E Bremner; Girish Kulkarni

doi:10.1016/j.juro.2018.03.006

The Bladder Utility Symptom Scale: A Novel Patient Reported Outcome Instrument for Bladder Cancer

J Urol. 2018 Aug;200(2):283-291. doi: 10.1016/j.juro.2018.03.006. Epub 2018 Mar 9.

Affiliations

¹ Division of Urology, Department of Surgery (NP, AF, RG, GK), University of Toronto and University Health Network, Toronto, Ontario, Canada; Toronto Health Economics and Technology Assessment Collaborative (MDK, KEBo, KEBr), University of Toronto and University Health Network, Toronto, Ontario, Canada; Division of Internal Medicine and Geriatrics (MDK, SMHA), University of Toronto and University Health Network, Toronto, Ontario, Canada; Department of Medical Oncology (SSS), University of Toronto and University Health Network, Toronto, Ontario, Canada; Department of Radiation Oncology (PC), University of Toronto and University Health Network, Toronto, Ontario, Canada; University Health Network and Toronto General Research Institute (GT), Toronto, Ontario, Canada; Princess Margaret Cancer Centre, Toronto, Ontario, Canada; Division of Urology, Trillium Health Partners (MJ), Mississauga, Ontario, Canada. Electronic address: nathan.perlis@uhn.ca.
² Division of Urology, Department of Surgery (NP, AF, RG, GK), University of Toronto and University Health Network, Toronto, Ontario, Canada; Toronto Health Economics and Technology Assessment Collaborative (MDK, KEBo, KEBr), University of Toronto and University Health Network, Toronto, Ontario, Canada; Division of Internal Medicine and Geriatrics (MDK, SMHA), University of Toronto and University Health Network, Toronto, Ontario, Canada; Department of Medical Oncology (SSS), University of Toronto and University Health Network, Toronto, Ontario, Canada; Department of Radiation Oncology (PC), University of Toronto and University Health Network, Toronto, Ontario, Canada; University Health Network and Toronto General Research Institute (GT), Toronto, Ontario, Canada; Princess Margaret Cancer Centre, Toronto, Ontario, Canada; Division of Urology, Trillium Health Partners (MJ), Mississauga, Ontario, Canada.

PMID: 29530786
DOI: 10.1016/j.juro.2018.03.006

Abstract

Purpose: Health related quality of life is important in bladder cancer care and clinical decision making because patients must choose between diverse treatment modalities with unique morbidities. A patient reported outcome measure of overall health related quality of life for bladder cancer regardless of disease severity and treatment could benefit clinical care and research.

Materials and methods: Prospective questionnaire development was completed in 3 parts. In study 1 the BUSS (Bladder Utility Symptom Scale) questions were created by experts using a conceptual framework of bladder cancer health related quality of life generated through patient focus groups. In study 2 patients with bladder cancer, including those treated with surgery, radiation and chemotherapy, completed the BUSS and 5 health related quality of life instruments at baseline and 4 weeks to assess validity and test-retest reliability. External validity was then explored in study 3 by administering the BUSS to 578 patients online and at clinics. Construct validity was assessed by whole and subscale Spearman rank correlations, and by comparisons of BUSS scores across known groups.

Results: The BUSS had high whole scale correlation with the FACT-Bl (Functional Assessment of Cancer Therapy-Bladder) (r_s = 0.82, p <0.0001) and substantial to high subscale correlations with the EQ-5D™-3L (EuroQol 5 Dimensions Questionnaire-3 Levels) (eg emotional well-being r_s = 0.69, p <0.0001). BUSS scores were lower in patients with comorbidity and advanced disease. Cognitive debriefing and the 94% completion rate suggested good comprehensibility. There was excellent test-retest reliability (ICC = 0.79). Limitations included an extended time from diagnosis in many patients.

Conclusions: The BUSS is a reliable and valid patient reported outcome instrument for health related quality of life in all patients with bladder cancer regardless of the treatment received or the stage of disease.

Keywords: neoplasm metastasis; patient health questionnaire; patient reported outcome measures; quality of life; urinary bladder neoplasms.

Publication types

Validation Study

MeSH terms

Aged
Female
Humans
Male
Middle Aged
Neoplasm Staging
Patient Reported Outcome Measures*
Pilot Projects
Prospective Studies
Psychometrics
Quality of Life*
Reproducibility of Results
Urinary Bladder / pathology
Urinary Bladder / surgery
Urinary Bladder Neoplasms / complications*
Urinary Bladder Neoplasms / pathology
Urinary Bladder Neoplasms / psychology
Urinary Bladder Neoplasms / therapy