Key issues affecting quality of life and patient-reported outcomes in prostate cancer: an analysis conducted in 2128 patients with initial psychometric assessment of the prostate cancer symptom scale (PCSS)
- PMID: 28167656
- PMCID: PMC5545159
- DOI: 10.1136/bmjspcare-2016-001146
Key issues affecting quality of life and patient-reported outcomes in prostate cancer: an analysis conducted in 2128 patients with initial psychometric assessment of the prostate cancer symptom scale (PCSS)
Abstract
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.
Keywords: PCSS; Quality of life evaluation; patient reported outcomes; prostate cancer; psychometric properties.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Conflict of interest statement
Competing interests: None declared.
References
-
- PROQOLID [Online Patient-Reported Outcome and Quality of Life Instruments Database] Secondary PROQOLID [Online Patient-Reported Outcome and Quality of Life Instruments Database] http://www.proqolid.org/
-
- US Department of Health and Human Services (USDHHS); Guidance for industry. Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. 2009 Dec;2009 Secondary US Department of Health and Human Services (USDHHS); Guidance for industry. Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. http://www.fda.gov/downloads/Drugs/Guidances/UCM193282.pdf. - PMC - PubMed
-
- Rnic K, Linden W, Tudor I, Pullmer R, Vodermaier A. Measuring symptoms in localized prostate cancer: a systematic review of assessment instruments. Prostate cancer and prostatic diseases. 2013;16:111–22. - PubMed
-
- Ochayon L, Zelker R, Kaduri L, Kadmon I. Relationship between severity of symptoms and quality of life in patients with breast cancer receiving adjuvant hormonal therapy. Oncology nursing forum. 2010;37:E349–58. - PubMed
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