Year

2022

Degree Name

Master of Philosophy

Department

School of Medical, Indigenous and Health Sciences

Abstract

The decision-making process for men with early stage prostate cancer is complex and difficult because prostate cancer, despite having a high incidence, has a low mortality and treatments, despite having significant side effects, may not prolong survival with many men dying of non-cancer health issues. There is, therefore, an imperative to treat young, healthy men with aggressive cancers (preventing undertreatment) and avoid treatment of men with low grade cancers and/or a limited life expectancy due to age or comorbidities (avoiding overtreatment). This thesis places the process of decision making as the central locus.

Study A (Chapter 4) was a practice audit of four urology practices and investigated the influence of cancer and non-cancer patient factors (such as age and comorbidities) on the treatment decision-making process. The concordance of the treatment chosen with published guidelines was established and then any possible over- or under-treatments estimated. Our study demonstrated that 80% of patients received treatment concordant with published guidelines; however, for low risk cancers approximately one third of patients received non- concordant treatment. Appropriately, younger patients with few comorbidities and more aggressive cancers were more likely to receive curative treatment.

Study B (Chapter 5) was a survey of 151 men diagnosed with prostate cancer and examined whether there was an association between the extent to which men wished to be involved in the decision-making process, their satisfaction with that process, and their levels of decision regret after treatment. Although one third of men found the decision difficult to make, the majority were satisfied with the decision making process and the level of communication with their clinician and for these men, rates of regret were low. A major finding of the study was that taking an active role in the treatment decision-making process led to greater satisfaction with that process which, in turn, reduced the chance of experiencing regret following treatment.

Study C (Chapter 6) aimed to gain a better understanding of the health literacy of men newly diagnosed with prostate cancer, the information sources they accessed, how helpful they found these sources, as well as the readability, understandability and actionability of these sources. The major finding was that approximately 20% of men, newly diagnosed with prostate cancer, had inadequate health literacy (HL), and this lower HL correlated with a younger age at leaving school. More than 80% of men used more than four sources of information, but older men, who are typically the group diagnosed with prostate cancer, were shown to access fewer sources, which may limit their ability to be involved in the shared decision-making process. In terms of information sources, men found their primary treating urologist the most helpful source of information and even though the internet was used by approximately half of the study participants, older men were less likely to use the internet as a source of information. The readability and understandability of many information sources was at too high a level and the actionability of these information sources was too low, meaning that men were not empowered to be involved and actually make a decision.

Study D (Chapter 7) assessed the level of health literacy among a broad group of men attending a urological clinic and investigated the concordance between two different published measures of health literacy. We also explored if there was an association between health literacy, cancer literacy and comprehension, and prostate cancer knowledge among this group of men. Similar to the previous study, more than 20% of men were shown to have low health literacy, with low scores specifically in areas relating to seeking and understanding information about their health. There was high concordance between two measures of health literacy and a positive correlation between cancer literacy and comprehension, and both measures of health literacy used in this study.

Our overall conclusion is that the process of decision making for men with prostate cancer is critical, with clinicians needing to assess both the life expectancy of the patient from non-cancer causes and the risk from the cancer if untreated and patients being involved in, and satisfied with, the decision-making process, which we have shown lead to lower rates of post-treatment regret. We also identified that low health literacy, and the low readability, understandability and actionability of available prostate cancer information sources, can potentially interfere with men’s involvement in the decision-making process.

FoR codes (2008)

111706 Epidemiology, 111710 Health Counselling, 111712 Health Promotion, 111799 Public Health and Health Services not elsewhere classified

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Unless otherwise indicated, the views expressed in this thesis are those of the author and do not necessarily represent the views of the University of Wollongong.