Patient‐reported outcome (PRO) questionnaires for men who have radical surgery for prostate cancer: a conceptual review of existing instruments

Abstract

To critically review conceptual frameworks for available patient-reported outcome (PRO) questionnaires in men having radical prostatectomy (RP), psychometrically evaluate each questionnaire, and identify whether each is appropriate for use at the level of the individual patient. We searched PubMed, the Reports and Publications database of the University of Oxford Patient-Reported Outcomes Measurement Group and the website of the International Consortium for Health Outcomes Measurement (ICHOM) for psychometric reviews of prostate cancer-specific PRO questionnaires. From these we identified relevant questionnaires and critically appraised the conceptual content, guided by the Wilson and Cleary framework and psychometric properties, using well established criteria. The searches found four reviews and one recommendation paper. We identified seven prostate cancer-specific PROs: the Expanded Prostate Cancer Index Composite-26 (EPIC-26), Expanded Prostate Cancer Index Composite-50 (EPIC-50), University of California-Los Angeles Prostate Cancer Index (UCLA-PCI), Functional Assessment of Cancer Therapy - Prostate Cancer Subscale (FACT-P PCS), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire - prostate specific 25-item (EORTC QLQ-PR25), Prostate Cancer - Quality of Life (PC-QoL), and Symptom Tracking and Reporting (STAR). Six out of seven measures purported to measure health-related quality of life (HRQL), but items focused strongly on urinary and sexual symptoms/functioning. The remaining questionnaire (STAR) claimed to assess functional recovery after RP. The psychometric evidence for these questionnaires was incomplete and variable in quality; none had evidence that they were appropriate for use with individual patients. Several questionnaires provide the basis of measures of urinary and/or sexual symptoms/functioning. Further work should explore other aspects of HRQL that are important for men having RP. Further psychometric work is also needed to determine whether they can be used at the individual level.

Single institution followed by national implementation of systematic surgical quality control and feedback for radical prostatectomy: a 20-year journey

“…Most existing PROM questionnaires used by ICHOM and others for follow-up after radical surgery for prostate cancer were recently reviewed by Protopapa et al, who concluded that the evidence is poor for that they are appropriate for assessing the outcome of individual patients in other domains than urinary and/or sexual function [20]. Hence, there is no evidence for that the data quality would be improved by changing currently used questionnaires.…”

Assessment of a patient-reported outcome measure in men with prostate cancer who had radical surgery: a Rasch analysis

“…This study is the first to use robust modern psychometric methods such as Rasch analysis to determine the measurement properties of a prostate cancer-specific PROM 21 and to evaluate its suitability to collect PROMs for use in clinical practice at the level of individual patients. It has allowed us to scrutinise each aspect of the questionnaire and to identify carefully which aspects work well and which do not.…”

“…In a systematic review of seven prostate cancer-specific PROMs, including the STAR instrument, 21 we identified that modern psychometric methods had not been used to evaluate the psychometric properties of these instruments. In this study, we therefore used Rasch analysis to estimate urinary and sexual function for individual men based on responses to the STAR instrument that were provided by men immediately before and up to 3 months after radical prostate cancer surgery.…”

Apalutamide and its Use in the Treatment of Prostate Cancer

“…Patients were required to complete two self-administered quality of life (QoL) instruments: the Functional Assessment of Cancer Therapy-Prostate (FACT-P) and the Euro-QoL Group EQ-5D-3L [32]. FACT-P examines health-related QoL and prostate cancer-specific symptoms [33]. EQ-5D-3L assesses health status [34].…”