What are the barriers and facilitators to interdisciplinary models of person-centred supportive care in the context of penile cancer? A mixed methods study

A/Prof Catherine Paterson, Dr Henry Yao, Prof Shomik Sengupta, Dr Justin Chee, Prof Ian Davis and Mr Wayne Earle (Patient Representative)

Globally, penile cancer is an uncommon malignancy with reported incidence of 0.84 cases per 100,000 globally. Treatment of penile cancer can be divided into the management of a primary penile tumour, and the management of regional A/PROF CATHERINE PATERSON lymph nodes. There are a range of treatment options for the management of primary penile tumour depending on the stage of disease, with the main treatment option being surgical removal. Although, in the case of precancerous changes or earlystage malignancies, non-surgical treatments such as topical chemotherapy or laser therapy may be applicable.

Despite the use of penile sparing therapy, all treatments can be disfiguring and this has a profound negative impact on the patient’s sexual function, quality of life (QOL), social interactions, self-image and psychological well-being.

Different forms of treatment are associated with their own individual challenges for patients, complications, unique psychological burden, and unmet supportive care needs. The rarity of penile cancer represents a significant challenge to the patient, partner and healthcare professional, at each step along the cancer care continuum, from diagnosis to treatment, and into survivorship. Evidence underscores that men can experience high unmet physical, psychological and sexual needs with each facet impacting and being intertwined with the other at varying degrees.

Evidence identifies the need for the rearrangement of clinical services to develop new approaches and standardised ways to identify and address the profound unmet supportive care needs of men diagnosed with penile cancer and their partners. What is clear, is that we need interdisciplinary clinical teams (specialist nurses, psychologists, urologists, medical oncologists, plastic surgeons and sex therapists) working together to promote a person-centred model of rehabilitative care from diagnosis and into survivorship. However, to date, no research has been undertaken in Australia to understand the experiences of care delivery, or the barriers and facilitators to interdisciplinary models of patient centred supportive care.

This study aims to:

1) assess the experiences of unmet supportive care needs, quality of life, anxiety, depression, distress and person-centred care in men affected by penile cancer, and their partners, and

2) to understand the barriers and facilitators of interdisciplinary models of person-centred supportive care delivery;

3) this study will help to inform future work in developing a pilot randomised controlled trial to test a future person-centred supportive care intervention.

To date, the delivery of supportive care for patients and their families affected by penile cancer internationally remains suboptimal. Evidence demonstrates that often patients and their partners require multiple interventions that focus on improving quality of life and addressing what matters most to them. Currently in Australia, researchers and healthcare professionals don’t know what does matter. References

MR WAYNE EARLE The outcome of this study aims to help improve the lives of men diagnosed with penile cancer and their partners. The research team aims to drive forward service improvements, produce information to help patients and their families, and help clinical teams choose the most appropriate model of person-centred supportive care. This study will provide the much-needed information to leverage funds to inform a future supportive

care intervention trial.

Sewell, J., et al., Trends in penile cancer: a comparative study between Australia, England and Wales, and the US. Springerplus, 2015. 4(1): p. 420. Hakenberg, O., et al. European Association of Urology: Penile Cancer. 2018 02.10.2020]; Available from: https://uroweb.org/ guideline/penile-cancer/. Mortensen, G.L. and J.K. Jakobsen, Patient perspectives on quality of life after penile cancer. Dan Med J, 2013. 60(7): p. A4655

Paterson, C., et al., What are the unmet supportive care needs of men a affected by penile cancer? A systematic review of the empirical evidence. European Journal of Oncology Nursing, 2020: p. 101805. Dräger, D.L., C. Protzel, and O.W. Hakenberg, Identifying psychosocial distress and stressors using distress-screening instruments in patients with localized and advanced penile cancer. Clinical Genitourinary Cancer, 2017. 15(5): p. 605-609.

Help us raise $50,000 for Penile Cancer Research

There are many synonyms and funny names for the penis as men feel obliged to entitle an item that commands so much of their attention during their lives. Prick, cock, dick, old fella, wife’s best friend, donger, willy, and (the classic) tallywhacker. Now imagine the same penis has penile cancer. All the laughter stops abruptly, very very abruptly. This is the news that about 100 men are given every year in Australia and it can be a death sentence -the five-year survival rate at every stage is only about 50%.

Treatments range from minor surgery, chemotherapy, radiation, circumcision and the real biggie, amputation (penectomy).

All stages of this terrifying disease require a plethora of specialists – a patient may need oncologists, nurses, urologists, psychologists, sex therapists and plastic surgeons. And in addition to the obvious physical damage, there are a great many potential negative psychological effects – depression, sexual malfunction, loss of quality of life and difficulty with social interactions, self-image and mental well-being.

A major problem in Australia is the complete lack of any research into the interaction needed between the various services, the patients and their partners and families to ensure the best possible physical and mental outcomes.

Want to help? Visit https://www. belowthebelt.org.au/research-appeal for more information or to support this important research.