“Problematically, after prostate cancer diagnosis and treatment up to 40% of men experience poorer quality of life and satisfaction with life over the next 10 years and, even with localized disease, one in five men will experience persistent anxiety and depression 1 year after treatment, with distress greater in men with advanced disease. Poorer long-term outcomes are associated with androgen deprivation therapy, multiple comorbidities, younger age at diagnosis, and socio-economic disadvantage. Survivorship care that seeks to enhance health and wellbeing outcomes over both the short and longer term is therefore crucial for this patient group.”
Dunn, J., Green, A., Ralph, N., Newton, R.U., Kneebone, A., Frydenberg, M. & Chambers, S.K. (2020).
In 2019, a uniquely inclusive expert clinical and community panel was formed to better understand the nature of prostate cancer survivorship and to identify survivorship domains and domain elements for inclusion in care guidelines taking into account evidence, importance, feasibility and consensus. The initiative resulted in the identification of domains that extend beyond traditional healthcare parameters to provide guidance for policymakers, clinicians, community and consumers on what is essential for step change in prostate cancer survivorship outcomes.
The 47-member panel included leaders from key Australian and New Zealand clinical and community groups and consumers from diverse backgrounds, including LGBTQIA people and those from regional, rural and urban settings.
Panel members included urologists, medical and radiation oncologists, family doctors, nurses, and physiotherapists from organisations including Cancer Council Australia, Peter MacCallum Cancer Centre, Cancer Voices New South Wales, Prostate Cancer Foundation of Australia, Prostate Cancer Foundation of New Zealand, Urological Society of Australia and New Zealand, Australian Prostate Centre.
The panel reached the view that improving the quality of prostate cancer survivorship requires a high care focus on the wider psychosocial impacts of cancer as well as medical intervention.
Six essential aspects of survivorship, including the vitally important component of personal agency, were identified:
- Health Promotion and Advocacy
- Shared Management
- Personal Agency
- Care Coordination
- Evidence-based Survivorship Interventions
Health Promotion and Advocacy
This means having accurate information about prostate cancer for men, their partners, their family, and their community and advocating for better treatment and services when needed. Information should be evidence-based, providing consistent messaging around prostate cancer, and tailored to take into account health literacy and preferences for different mediums of access.
This means patients being an equal partner in their health care, sharing decision-making with the entire health care team, and sharing and discussing approaches to tackle challenges as they arise. It extends to respecting a patient’s wishes to engage in decision-making to the extent they prefer, involves acknowledging and supporting the role family members and carers play, and requires access to patient records. Prostate cancer specialist nurses can play a central role as navigators.
This refers to the clinical surveillance of patients across the entire survivorship experience from diagnosis onward with attentive surveillance of physical and psychosocial effects, comorbidities, recurrence and second cancers. It also extends to monitoring psychosocial effects on partners and family members. Additional sources of information to evaluate patients, including observations from partners and other family members, are important to take into account.
Personal agency belongs to the patient. It is about supporting a man’s ability to be self-aware and understand risk factors in the progress of their treatment journey and to seek assistance when needed. It does not mean leaving the patient to go it alone. Recognizing patients as actors in building personal resilience, managing their own health and with mastery in navigating the healthcare system will lead to improved survivorship outcomes.
This is about the health care team working together to get patients and families the best care possible in a ‘right place, right care, at the right time’ approach. It means the entire team working together and communicating effectively, without siloing. It includes approaching care in a men-centred way, acknowledging that men-centred care is deeply contextual and dynamic, but includes a consideration of how healthcare services for men intersect with masculinity and with men’s preferences for the design and delivery of prostate cancer survivorship care.
Evidence-based Survivorship Interventions
This is about using only resources and strategies that have strong evidence of effectiveness in supporting quality of survivorship. Key evidence-based survivorship interventions include psychosocial care, exercise and physical activity, nutrition, peer support, financial assistance, and prostate cancer specialist nurses. It is important that psychosocial care interventions to maintain intimate relationships comprise sexual health support tailored to individual men including those in different age groups and from LGBTQIA backgrounds.
The Framework in Use
The world’s first use of the Prostate Cancer Survivorship Essentials Framework in a patient care resource was in 2020, when a new edition of the evidence-based low-intensity mental health intervention Facing the Tiger was released. A new chapter outlines what the framework means to men, their partners and their health care team. It shows how a focus on personal agency contributes to a better quality of life in survivorship.
In September 20201, a A$2.25 million funded translational research trial was announced in Australia based on the Prostate Cancer Survivorship Essentials Framework to inform health service delivery in a real-world setting. The trial will test the clinical and cost-effectiveness of nurse-led survivorship care for improving the health and well-being of men on hormone therapy for prostate cancer.
The trial seeks to establish a sustainable tailored care model and bring better understanding of how specialised support improves quality of life and survivorship outcomes for men on hormone therapy. More than 200 men will participate in the trial, with care provided by around 100 specially-trained prostate cancer care nurses through four telehealth sessions over four weeks, with a booster session a month later. Sessions will cover distress management strategies, decision support, treatment education with self-management and skills training for symptom effects, and communicating with health professionals. Following the trial, it is hoped that a tailored care service will be integrated into mainstream practice and thus made available to every man diagnosed with prostate cancer on hormone therapy.
Survivorship matters to all. Research shows that men and their doctors, and the nurses and allied health professionals who look after them, report the experience of prostate cancer as being challenging, medically focused, and uncoordinated, with men’s support needs often not being adequately met. It makes sense then, to use the Prostate Cancer Survivorship Essentials Framework to guide modern treatment for prostate cancer. All health professionals involved in prostate cancer from diagnosis through to advanced stage treatment, want the best outcomes for their patients. Ensuring a psychosocial as well as medical focus throughout treatment brings with it better survivorship.
It is hoped that this framework is further adopted worldwide and refined for the specific needs of national culture and health systems.
Dunn, J., Green, A., Ralph, N., Newton, R.U., Kneebone, A., Frydenberg, M. & Chambers, S.K. (2020). Prostate cancer survivorship essentials framework: Guidelines for practitioners. British Journal of Urology International, July, doi:10.1111/bju.15159
Dunn, J., Koczwara,B., & Chambers, S.K. (2021). Rethinking cancer survivorship: the Prostate Cancer Survivorship Essentials Framework. The Medical Journal of Australia, June, doi.org/10.5694/mja2.51142