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US Population Reference Values for Health-Related Quality of Life Questionnaires Based on Demographics of Patients
David Cella1, Arijit Ganguli2, James Turnbull3
1Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA. d-cella@northwestern.edu.
Introduction:
The patient experience with prostate cancer differs throughout the disease continuum, with health-related quality of life (HRQoL) and symptoms worsening as the disease progresses. To understand the prostate cancer experience, it is important to understand the experience of same-aged men without prostate cancer as a basis for comparison. This study provides the US population reference values for six patient-reported outcome (PRO) questionnaires.
Methods:
A cross-sectional online survey, including several PRO questionnaires, was administered in 2019 to a representative sample of US adults. The male sample (N = 876) was raked by age to have similar characteristics of men in key advanced prostate cancer trials (mean/median age: 67.5/70.0 years), with the majority being white and non-Hispanic.
Results:
Results from six PRO questionnaires (Brief Pain Inventory; Quality of Life in Neurological Disorders 2.0 Cognitive Short Form; PRO Measurement Information System Fatigue-Short Form; Functional Assessment of Cancer Therapy-General; European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30; and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Prostate Cancer Module) indicated that the US representative sample of men have good role, physical, and emotional functioning but slightly impaired social, functional, and overall well-being. In addition, they have normal cognitive function, few financial problems, minimal pain and fatigue, minimal urinary and bowel symptoms, and limited use of incontinence aids.
Conclusions:
The availability of the reference values for these PRO questionnaires will enable researchers to compare the HRQoL of patients with advanced prostate cancer in the US with that of the general US population and allow for a better interpretation of those scores. Registration numbers of advanced prostate cancer trials: NCT02677896, NCT02003924, NCT01212991, NCT00974311.
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