A Mixed-Methods Approach to Examine Survivorship in Men with Prostate Cancer: Long-term outcomes from the New South Wales Prostate Cancer Care and Outcomes Study

Abstract

Worldwide, over 1.3 million men are diagnosed with prostate cancer annually, it is the second most commonly diagnosed cancer and fifth leading cause of cancer related death among men. Australia and New Zealand have one the highest incidence rates of prostate cancer with 1 in every 7 men likely to be diagnosed by age 85 in their lifetime. Despite this high incidence, relative survival rates from prostate cancer are nearly 100% for men with localised disease surviving at least five years, and 96% of men surviving 15 years. Currently, there are over 210,000 Australian men living with a previous diagnosis of prostate cancer, the population commonly referred to as ‘prostate cancer survivors’. Cancer survivorship encompasses the health and wellbeing of the whole person, from diagnosis and treatment, to end of life. The concept of survivorship is not limited to concerted efforts in disease management, but also includes cancer-related physical, psychological, and unmet supportive care needs affecting patients, families and caregivers. The high incidence of prostate cancer and increasing prevalence of prostate cancer survivors presents a major challenge for the Australian health system and workforce as the long-term consequences of disease is a neglected area of research, both nationally and internationally. Few studies have reported long-term (10+ years) outcomes for men with prostate cancer. The New South Wales Prostate Cancer Care and Outcomes study (PCOS) is a longitudinal population-wide cohort study of men with prostate cancer. PCOS has collected self-reported quality of life outcomes over a 15-year period since original prostate cancer diagnosis. In order to better understand the long-term survivorship experience of men with previously diagnosed prostate cancer, a mixed-methods approach was used with data from 15-year follow-up and qualitative interviews with survivors to examine: 1) Survival differences between areas of accessibility; 2) Self-reported quality of life differences between men with prostate cancer across common treatment groups and those without the disease; 3) Self-identified unmet supportive care needs; 4) Patient experiences in long-term coping and adjustment to prostate cancer; 5) Identification of survivorship typologies or identities. As the population of prostate cancer survivors continues to grow, this research offers insight to the current landscape of what being a prostate cancer survivor entails and is fundamental for the development and improvement of the survivorship experience of men in the future.