Aim: To describe self-reported, health-related quality of life (HRQoL) outcomes and unmet supportive care needs in a cohort of men with previously diagnosed prostate cancer, and their partners.
Methods: Participants were drawn from the NSW Prostate Cancer Care and Outcomes Study, a longitudinal prospective cohort study. Eligible men were aged less than 70 years, diagnosed with prostate cancer in 2000 to 2002 and resident in NSW. Partners were recruited through participating men. 15-year follow up was undertaken with consenting men using the Expanded Prostate Cancer Index measure for HRQoL and the Cancer Survivors’ Unmet Needs (CaSUN) Survey for unmet supportive care needs. Participating partners completed the Cancer Survivors’ Partners Unmet needs (CaSPUN) survey.
Results: Of the 1398 eligible men, 701 completed 15-year follow-up. 350 men went on to compete the CaSUN survey and 138 partners completed CaSPUN. Patient mean age and follow-up time were 75.8 and 15.6 years respectively. ANCOVA Quality of Life analysis revealed that men who initially had external-beam radiation continue to report significant issues with bowel function (AMD -9.5, 95% CI [-17.44, -1.49]) with radical prostatectomy as the referent. Additionally, 37.4% of men, and 30.1% of partners, reported at least one unmet need at 15-year follow up. Logistic regression revealed clinical factors of disease, specifically a higher PSA score at diagnosis (OR 5.74 CI 1.61-20.5), to be the only significant predictor of future unmet needs.
Conclusions: 15 years post-diagnosis men are still experiencing quality of life issues in the domains of sexual function, urinary incontinence and bowel function. Men and their partners are also expressing the need to ensure clinicians are working together to coordinate care. This research suggests that follow-up care in the second post-treatment decade is still needed, and a proportion of prostate cancer survivors may benefit from a multidisciplinary approach to long-term cancer care.