Objective: To trial collecting patient-reported outcome measures (PROMs) to assess psychosocial outcomes in men with prostate cancer (PC).
Methods: A cross-sectional postal survey was sent to three groups of 160 men with PC (6, 12 and 24 months post-initial treatment; ntotal = 480), through the South Australian Prostate Cancer Clinical Outcomes Collaborative (SAPCCOC) registry (2017). Outcomes were as follows: response rate, completeness, general and disease-specific quality of life, distress, insomnia, fear of recurrence, decisional difficulties and unmet need.
Results: A response rate of 57-61% (n = 284) was achieved across groups. Data completeness was over 90% for 88% of survey items, with lower response (76-78%) for EPIC-26 urinary and sexual functioning subscales, sexual aid use (78%) and physical activity (68%). In general, higher socio-economic indicators were associated with higher completion of these measures (absolute difference 12-26%, p < 0.05). Lower unmet need on the sexuality domain (SCNS-SF34) was associated with lower completion of the EPIC-26 sexual functioning subscale [M (SD) = 12.4 (21.6); M (SD) = 26.3 (27.3), p < .001]. Worse leaking urine was associated with lower completion of urinary pad/diaper use question (EPIC-26) [M (SD) = 65.9 (26.5), M (SD) = 77.3 (23.9), p < .01].
Conclusion: Assessment of psychosocial PROMs through a PC registry is feasible and offers insight beyond global quality of life assessment, to facilitate targeting and improvements in services and treatments.
Keywords: feasibility; monitoring; patient-reported outcomes; prostate cancer; psychosocial outcomes; quality of life.
© 2020 John Wiley & Sons Ltd.