Avoiding the ‘survivorship abyss’: Qualitative insights from 15‐year prostate cancer survivors

Abstract

As many men diagnosed with prostate cancer (PC) are now living well beyond diagnosis and treatment, these survival gains necessitate improved understanding of long-term survivorship experiences. This is the first qualitative study that aimed to provide insights into PC survivors' adjustment to diagnosis and any persisting or emerging cancer/treatment-related issues over 15+ years. Semi-structured interviews were conducted with 37 men purposively sampled from the 15-year follow-up phase of a population-wide cohort study, the New South Wales Prostate Cancer Care and Outcomes Study (PCOS). Interview data were transcribed and thematically analysed applying a framework methodology. The majority of participating men (88.6%) had been diagnosed with localised disease and were treated with radical prostatectomy as primary treatment (54.1%). Four main interconnecting themes relating to men's long-term survivorship experience with PC were identified: (1) Survivorship reflections, (2) interactions with the healthcare system, (3) personal and social relationships and (4) dominant coping strategies. Many men reported gaps along the continuum of care and a feeling of abandonment across their long-term survivorship, encompassed by a perceived lack of psychosocial and informational support for persisting treatment side-effects, especially sexual dysfunction. Receiving adequate survivorship care and trusting patient-clinician relationships appeared to be associated with greater resilience and positivity in the men's acceptance of cancer-related long-term challenges and personal limitations. Long-term PC survivors continue to experience lasting treatment impacts, with many men reporting unmet needs and a lack of continuity of multidisciplinary care. Implementation of coordinated and tailored survivorship care and shared care pathways with multidisciplinary practitioners will facilitate men's improved engagement and timely access to supportive care interventions, helping to avoid the 'survivorship abyss'.