Objective Evidence-based quality of life (QL) questionnaires require the identification of issues of importance to patients. The primary aim of this study was to inform providers on patient-expressed issues while enhancing the content validity of instruments assessing QL and patient-reported outcomes (PROs) in prostate cancer. The study provided additional psychometric properties for the new PRO and QL instrument, the Prostate Cancer Symptom Scale (PCSS).
Methods An anonymous web-based survey of 2128 patients with prostate cancer was conducted with patients rating 18 QL items on a five-point scale.
Results Most respondents (74%) were aged 55–74 years, had early stage disease at diagnosis (81%) and were diagnosed within 2 years of the survey (81%). The top five-rated issues were: overall QL, ability to perform normal activities, maintaining independence, ability to sleep and not being a burden. These items were ranked as either ‘very important’ or ‘important’ by at least 88% of patients. None of the most highly ranked issues were symptoms. Instead, the highest ranked items were global issues reflecting the impact of symptoms on patients. In addition to the enhanced content validity findings, good reliability results and initial support for construct validity are reported for the PCSS.
Conclusions This is the largest survey providing patient-expressed background for content validity for QL and PRO measures. The findings of this study should aid development of newer practical questionnaires, such as the PCSS, which can be adapted to electronic platforms enhancing rapid and accurate PRO and QL evaluation.
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Contributors PM, RJG and PJH planned the study. RJG and PJH managed and implemented the study. PM and RAJ conducted data analysis. PM, RJG and PJH wrote the first draft of the paper and are guarantors of the study; all authors contributed to further redrafting of the final manuscript. All authors had full access to all the data in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis.
Funding This study was supported in part by grants from the US National Cancer Institute (grant number 1R21CA131754-01) and from the Robert Wood Johnson Foundation Nurse Faculty Scholars Programme (grant number 66517). PM is supported by the US National Institutes of Health T32 CA009666 grant.
Competing interests None declared.
Ethics approval Ethical approval was not sought at the time the survey was conducted as responses were fully anonymous, participation was elective and the study did not contain questions on sensitive topics. Participants' informed consent was indicated by each individual's willingness to complete the questionnaire.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement All primary data used for this study are available on request via email to the corresponding author.
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