Best of Best Poster Oral Clinical Oncology Society of Australia Annual Scientific Meeting 2019

Exploring the Survivorship Abyss: Qualitative insights from survivors of prostate cancer 15 years post-diagnosis (#188)

Carolyn G Mazariego 1 2 , Ilona Juraskova 3 , Rebekah Laidsaar-Powell 3 , David P Smith 1 2 4
  1. School of Public Health, University of Sydney, Sydney, NSW, Australia
  2. Cancer Council NSW, Woolloomooloo, NSW, Australia
  3. Centre for Medical Psychology and Evidenced-based Decision-making (CeMPED), School of Psychology, Faculty of Science, University of Sydney, Sydney , NSW, Australia
  4. Menzies Health Institute Queensland, Griffith University, Brisbane, QLD, Australia

AIMS:

Men diagnosed with localized prostate cancer are now living well beyond diagnosis and treatment due to improved detection and treatment methods. As such, an understanding of the long-term survivorship experience must now parallel these survival gains. This is the first qualitative study aimed to provide insight into how men adjusted to prostate cancer and any persisting or novel cancer/treatment-related issues experienced with 15-year post-diagnostic follow-up.

METHODS:

Participants were purposively sampled from the 15-year follow-up phase of the New South Wales Prostate Cancer Care and Outcomes Study, a population-wide cohort study. Thirty-five men completed semi-structured interviews. Interview data were transcribed and thematically analysed applying a Framework methodology.

RESULTS:

Participating men were aged 67-84 years old, and had an average follow-up time of 15.7 years since original prostate cancer diagnosis. Five main interconnecting themes relating to the coping and adjustment experience of men were identified from 35 semi-structured interviews: 1) Attitudes & responses to diagnosis & treatment; 2) Interpersonal relationships; 3) Interaction with the healthcare system; 4) Lasting impacts; and 5) The survivorship abyss. Many men identified gaps along the continuum of care, referencing a ‘secret club’ they felt forced into when diagnosed, encompassed by a perceived lack of informational support with persisting treatment side-effects, especially sexual dysfunction. Participants who received adequate supportive care and had greater trust in their clinicians reported higher levels of resilience and positivity in acceptance of long-term challenges and personal limitations.

CONCLUSION:

Long-term survivors from prostate cancer continue to experience lasting impacts from treatment and report lack of continued care immediately after treatment through to the second post-diagnostic decade. Prostate cancer patients would benefit from a survivorship care plan that would address these emerging limitations with timely interventions that allow patients to continue to engage with a multidisciplinary team to avoid the survivorship abyss.