Introduction: Our purpose was to: (1) assess the level of consistency between the quality-of-life (QOL) scores of men with prostate cancer for urinary/bowel/sexual bother, collected via telephone versus self-administered survey; (2) determine factors associated with variation in level of agreement; and (3) assess the efficacy of telephone interview as a mode of administration against the "gold standard" tool, EPIC-26.
Methods: Cohen's Kappa coefficients were calculated to investigate test-retest reliability across modes of administration. Logistic regression models explored patients' characteristics associated with the magnitude of urinary/bowel/sexual problem. Sensitivities and specificities of the telephone mode in reference to "gold standard" were further measured.
Results: From 221 men who agreed to participate in the study, 168 (76.0%) returned completed surveys. Kappa-linear model resulted in a moderate agreement across the urinary/bowel/sexual bother scores for both modes of administration; with greatest concordance recorded for bowel bother (90%). Patient's age (<75 years), disease risk, and active treatment type determined a moderate-to-good level of agreement between administration modalities with a Kappa varying between 0.44 and 0.73; χ(2), 8.18; P = .042. Sensitivity tests revealed that 68% of men with a moderate/big problem during the phone interviews would respond to suffering from a moderate/big sexual problem.
Conclusion: Results of this pilot study revealed that QOL outcomes from this registry will likely underestimate the true bother experienced by men. More research is required to determine the differences between self-administered and telephone interviews in men with prostate cancer.
Keywords: Bowel; Clinical registry; PROMs; Self-reported; Sexual; Urinary.
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