Assessing Symptom Burden in Bladder Cancer: An Overview of Bladder Cancer Specific Health-Related Quality of Life Instruments

Abstract

Background: A key component to monitoring and investigating patient QOL is through patient reported health related quality of life (HRQOL) outcome measures. Many instruments have been used to assess HRQOL in bladder cancer and each instrument varies in its development, validation, the context of its usage in the literature and its applicability to certain disease states.Objective: In this review, we sought to summarize how clinicians and researchers should most appropriately utilize the available HRQOL instruments for bladder cancer.Methods: We performed a comprehensive literature search of each instrument used in bladder cancer, paying particular attention to the outcomes assessed. We used these outcomes to group the available instruments into categories best reflecting their optimal usage by stage of disease.Results: We found 5 instruments specific to bladder cancer, of which 3 are validated. Only one of the instruments (the EORTC-QLQ-NMIBC24) was involved in a randomized, prospective validation study. The most heavily used instruments are the EORTC-QLQ-BLM30 for muscle-invasive disease and the FACT-Bl which is used across all disease states. Of the 5 available instruments, 4 are automatically administered with general instruments, while the BCI lacks modularity, and requires co-administration with a generalized instrument.Conclusion: There are multiple strong instruments for use in gauging HRQOL in bladder cancer patients. We have divided these instruments into three categories which optimize their usage: instruments for use following NMIBC treatments (EORTC-QLQ-NMIBC24), instruments for use following radical cystectomy (FACT-Bl-Cys and EORTC-QLQ-BLM30) and more inclusive instruments not limited by treatment modality (BCI and FACT-Bl).

Evaluating patient‐reported outcome measures (PROMs) for bladder cancer: a systematic review using the COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) checklist

“…Our present review found more support for the BCI, as it was more frequently evaluated in research and scored more favourably using COSMIN. However, the BCI is not without flaw, as evidence has suggested it may be difficult to interpret in circumstances where function and bother scores are different for a domain, under which circumstances researchers must choose whether HRQL should be determined by symptoms (function) or importance of symptoms to the patient (bother) . Consequently, it was recommended that a generic or cancer‐generic PROM be administered alongside the BCI .…”

“…However, a recent overview paper of BC PROMs suggests that the FACT‐Bl performs better than indicated in the present review. The authors state each new Functional Assessment of Chronic Illness Therapy (FACIT) scale undergoes an assessment of test–retest reliability, responsiveness, and convergent and divergent validity with 50 patients (confirmed by personal correspondence with FACIT, by S.J.M. on 14/09/2017).…”

Einfluss der radikalen Zystektomie auf die Lebensqualität und Strategien für deren Erhalt

“…Der EORTC-QLQ-BLM30 und der FACT-Bl-Cys sind für den Einsatz nach radikaler Zystektomie konzipiert [10].…”

“…In der uro-onkologischen Literatur wird am häufigsten der FACT-Bl für die therapieunabhängige Erfassung der HRQOL bei Patienten mit muskel-und nicht muskelinvasivem UCB verwendet [10].…”

HRQOL related to urinary diversion in Radical Cystectomy: a systematic review of recent literature

“…The higher the score, the higher the QoL. The questions BL4 (I am interested in sex) and BL5 (I am able to have and maintain an erection) are not currently scored (3,4).…”