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Quality of Life and Health State Utilities in Bladder Cancer

BACKGROUND:

Bladder cancer treatments may variably impact health-related quality of life (QOL).

OBJECTIVE:

To characterize the quality of life of patients with bladder cancer at various time points across the continuum of bladder cancer care from non-muscle-invasive disease to metastatic bladder cancer and develop utility scores to inform cost-effective analyses.

METHODS:

We performed a cross-sectional survey of bladder cancer patients in the Bladder Cancer Advocacy Network Patient Survey Network. Participants were classified into mutually exclusive health states based upon non-muscle invasive (NMIBC), muscle-invasive (MIBC), or metastatic bladder cancer and completed surveys of generic cancer and bladder cancer-specific quality of life, financial toxicity, and work impairment. We constructed generalized linear mixed models to identify patient, clinical, and treatment factors associated with quality of life over time and derived health state utilities.

RESULTS:

Among 911 self-identified patients with bladder cancer, overall QOL scores and function domains were worse among those with advanced cancer. Financial toxicity was similar among non-metastatic disease states. Work and activity impairment increased with advancing disease (13%and 12%among non-recurrent NMIBC to 63%and 31%for metastatic disease respectively; p < 0.01). On multivariable analysis, bowel-related QOL was diminished among patients with MIBC, with urinary symptoms and physical function most diminished among patients with metastatic disease. Patients with metastatic and MIBC experienced worse emotional functioning (p = 0.04; p = 0.048). Health state utilities were calculated, highest among those with non-recurrent NMIBC and lowest among those with metastatic disease.

CONCLUSION:

Generic and bladder cancer-specific QOL diminishes with advancing disease. Health state utility estimates derived from this study can inform shared decision making with patients and may be used to inform future cost-effective analyses.

INTRODUCTION

Understanding the expected QOL outcomes for patients of various stages of bladder cancer can inform the clinical care of patients by enunciating expected outcomes at various time points in the trajectory of a patient’s bladder cancer. Understanding the impact of bladder cancer treatments on patient-centered outcomes beyond cancer recurrence and survival would inform treatment decision-making, could be used to populate health economic models that evaluate the cost utility of different bladder cancer treatment and surveillance strategies, and could inform clinical trial design. Finally, by assessing QOL across the spectrum of bladder cancer care, these results may elucidate gaps in our knowledge of bladder cancer care. This might inform novel patient-centered outcomes research to improve the care and outcomes of men and women with bladder cancer.

Therefore, our primary objective was to obtain estimates for bladder cancer-specific QOL for patients with NMIBC, MIBC, and metastatic bladder cancer. Secondary objectives for this study were to evaluate the impact of stage of bladder cancer on financial burden and work disability of patients and to characterize patient-reported health state utilities for various bladder cancer health states. We hypothesized that QOL and health state utilities would decrease among patients with more advanced bladder cancer.

METHODS

Study design and participants

A cross-sectional online survey was administered among self-identified patients with bladder cancer recruited from the Bladder Cancer Advocacy Network (BCAN) Patient Survey Network (PSN) (n = 980). Inclusion criteria were self-identified patients with bladder cancer who were able to read and write in English and consent to an online survey. The PSN was established using a combination of email, online, print, and word-of-mouth advertisement through BCAN, with the purpose of incorporating patients into the research process through prioritization of important patient-centered research questions [2].

For recruitment, we sent an email to PSN participants in May 2019. We also posted the survey on the Inspire bladder cancer forum, the largest online support forum for patients and caregivers with bladder cancer [3]. Two reminders were sent, and the survey was closed on June 7, 2019. Participants were asked to provide online consent prior to answering questions. Two subsequent reminders were sent. The study was exempt from the Institutional Review Board at the University of North Carolina at Chapel Hill.

Survey measures

Patients were queried regarding demographics (e.g. age, sex, race, marital status, household income, education), bladder cancer characteristics (highest stage diagnosed, treatments received, cancer recurrence, time since diagnosis and treatment), validated QOL measures, financial toxicity, and work productivity and activity impairment.

Generic cancer-related QOL was measured using the EORTC QLQ-C30 [4], which assesses health-related QOL of cancer patients through five functional scales (physical, role, cognitive, emotional and social), three symptom scales (fatigue, pain, nausea and vomiting), a global health status/QOL scale, and six single items assessing additional symptoms. Responses are scored from 0 to 100, with a higher score for global health status or functional scale representing a higher level of functioning or QOL, and a higher symptom score indicating a higher level of symptomatology or problems. Score differences of 10 points or more between patient subgroups are considered to be clinically relevant [5].

We measured bladder cancer-specific QOL with the Bladder Cancer Index (BCI), which consists of 57 questions grouped into urinary, sexual and bowel domains [6]. Each domain consists of a summary score which is further stratified into function and bother subdomains. Responses for each domain are standardized to a 0 to 100 scale, with higher scores indicating better function and less bother.

Financial toxicity was measured using the 11-item Comprehensive Score for financial Toxicity (COST) questionnaire [7]. COST scores range from 0 to 44, with lower scores representing worse financial toxicity.

Work Productivity and Activity Impairment (WPAI) was measured using the WPAI Questionnaire: General Health v2.0 (WPAI:GH) in which responses are expressed as impairment percentages, with higher numbers indicating greater impairment and less productivity (i.e., worse outcomes) [8].

Health states and utilities

Four mutually exclusive health states were identified based on respondents’ self-reported highest stage and subsequent treatments. Non-recurrent NMIBC included patients for whom NMIBC had never recurred. Recurrent NMIBC included patients for whom the cancer recurred but did not progress. MIBC, and metastatic bladder cancer included pa-tients in whom bladder cancer had spread outside of the bladder. Health state utilities were derived using a validated algorithm to derive cancer-specific utilities using the EORTC QLQ-C30, using the recommended Model 2 which provides specified coefficients to perform the conversion [9]. We stratified analyses of utilities by a priori selected clinically-important subgroups beyond the above-stated health states.

Statistical analysis

Descriptive statistics were used to summarize the demographic and clinical characteristics of our study sample. To evaluate cancer and disease-specific health-related quality of life measured with the EORTC QLQ-C30 and BCI, we used generalized linear mixed models, accounting for differential time since treatment and treatment type.