When David was diagnosed with prostate cancer and later staged, we did as academics would do for any other study—we researched prostate cancer and its treatments as if it were an academic exercise. This had several effects. Firstly there was an element of externalization of the problem, hence some measure of objectification, coupled with an undoubtable degree of denial—if the disease is “out there” then it cannot be simultaneously inside David. Secondly, and more importantly, it educated us very rapidly about the disease and enabled us to make what we felt was an informed choice of treatment, having weighed up what was important to us, and estimating with which side effects and which lasting effects we could envisage living.
Oddly enough, it did not occur to either of us to look at the NICE Guidelines for Prostate Cancer, where we would have found out about patient-decision aids and we have been left wondering why these were never mentioned by either the oncologist or the urologist. 
After David’s treatment, we both became volunteers for Prostate Cancer UK: raising public awareness and educating medical and healthcare practitioners about the patient/partner perspective. David also became a patient representative on the STAMPEDE [Systematic Therapy in Advancing or Metastatic Prostate Cancer: Evaluation of Drug Efficacy] trial.
In the course of our volunteering, we frequently heard about treatment regret and a common phrase was “if only I had known…”
So, we set out to informally find out about other people’s experience of living with prostate cancer, what people were learning through having been patients/partners in the prostate cancer journey, and their experience of prostate-related patient-decision aids. We wanted to find out what information they were provided with and the extent to which a) their understanding of information was appropriately checked by medical and healthcare professionals; b) they had the opportunity to make informed decisions; and c) they had been influenced by healthcare professional preferences.
The more we asked, the more we found that few of our fellow patients had ever encountered patient-decision aids and few had known much about all the available options, especially their long-term effects. Treatment regret was common. Patients and partners were more likely to have obtained information that was useful and important via organisations such as Prostate Cancer UK (whose websites led them to meet volunteers) rather than healthcare professionals. However, interaction with the voluntary sector often took place after treatment rather than before.
What we want to do now is to expand from this earlier work to cover not only a greater range of patients who have had early/intermediate stage prostate cancer and their partners, but also to include patients who have had early/intermediate stage breast cancer and their partners, the two diseases being epidemiologically very similar in terms of morbidity and mortality. Our aim is to produce results that will lead to a greater awareness of the need to involve patients and partners in a meaningful manner in shared decision-making and in the use of patient-decision aids so that they have adequate information of all treatment options, including short-term and long-term effects, and that their understanding of information is appropriately checked by medical and/or healthcare professionals. The main message so far is that patients and their partners need relevant information and effective communication, born out of genuine interest in their wellbeing as individuals, not just as service users.
David Matheson is Reader in the Faculty of Education, Health and wellbeing, University of Wolverhampton. His research includes preparedness for practice of educational, medical and healthcare professionals, treatment of prostate cancer and Wikipedia use by medical practitioners and in academia.
Catherine Matheson-Monnet is Senior Research Fellow, Wessex Centre for Implementation Science, Faculty of Health Sciences, University of Southampton. Her research includes evaluation of new care models, including integrated care teams and innovative interventions in digital health innovations, mental health, dementia, nutrition.
Individually and together, they have been involved in research, evaluation and education about education and healthcare/medical education for many years.
Competing interests: None declared.
- NICE. Prostate cancer: diagnosis and management. Clinical guideline [CG175] London: National Institute of Health and Clinical Excellence; 2014 [Available from: https://www.nice.org.uk/guidance/cg175 accessed 03/04/18]