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

Article extract and summary: Psych-Oncology May 2021

Carolyn G. Mazariego, Rebekah Laidsaar-Powell, David P. Smith,  & Ilona Juraskova

DOI: 10.1002/pon.5738

Five systematic reviews have synthesised qualitative evidence on facets of PC survivorship experiences, however, none of the included individual studies were specific to long-term perspectives of prostate cancer survivorship. In 2019 alone, several qualitative studies were conducted involving mixed samples of prostate cancer survivors ranging from 1 month to 21 years posttreatment. These studies found that men living with prostate cancer often face a multitude of physical and psychological challenges, irrespective of treatment modality. Prostate cancer related physical issues can include urinary, bowel and sexual dysfunction whilst psychosocial challenges include depression, anxiety and suicidal thoughts. At diagnosis, men typically focus on treating their cancer, with a gradual shift to the management of disease and side-effects immediately and short-term posttreatment. To our knowledge, no qualitative study has focused on exploring the impact of prostate cancer in long-term (15+ years) prostate cancer survivors.

This study provides in-depth qualitative insights into the under studied area of long-term experiences of men diagnosed with prostate cancer ,specifically focussing on 15+ years post diagnosis. A number of novel and important findings emerged from the interviews with men. First, a prominent issue men detailed was the ongoing disruption that prostate cancer and associated treatment continued to cause in their lives, particularly long standing sexual dysfunction. Several men reported that over the 15+ years since diagnosis. they were rarely given the opportunity to discuss sexual issues with a healthcare professional, and those that did cite such conversations described them as often awkward, limited or lacking empathy. Ultimately, there was confusion and ambiguity as to who men should speak with regarding these ongoing issues and many men instead internalised these thoughts to ‘get on’ with life.

It is important that health professionals, particularly general practitioners who are now more likely to be the primary clinical contact for long-term survivors, regularly check in with men posttreatment and discuss any residual treatment effects while assessing the desire for clinical or psychosocial interventions. Ideally, relevant resources and interventions would be offered during acute survivorship, as timely interventions have been proven to reduce distress and anxiety in prostate cancer patients and could also prove to have a positive impact on reducing the reported frustration with unmet informational and rehabilitation support in regard to sexual function.

In our study the perceived discontinuation and/or Iack of follow-up care, referred to here as the ‘survivorship abyss’, was regarded by men as particularly challenging. Whilst the American Prostate Cancer Survivorship Guidelines detail areas of focus for prostate cancer survivors, to our knowledge, no specific guidelines or national survivorship care plans exist for prostate cancer survivors in Australia. Despite the paucity of national coordinated efforts to address these challenges, the introduction of A Psychosocial Care Model for Men with Prostate Cancer in 2019 recommends routine distress screenings and referral to evidence­ based psychosocial care for prostate cancer survivors.

This study offers novel insights into the long-term survivorship experiences of men with prostate cancer, ultimately finding that these men continue to report challenges and issues commonly experienced by shorter-term survivors of prostate cancer, and that communication around these issues is continually suboptimal. This suggests that many men are not receiving adequate posttreatment follow-up care, including distress screenings and management of persisting side-effects. As the prevalence of prostate cancer survivors continues to grow globally, the absence of integrated shared survivorship care models into clinical practice, such as survivorship care guidelines/plans and/or interventions, will perpetuate the sense of abandonment and the overwhelming burden of care of men lost in the prostate cancer ‘survivorship abyss’.

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