Quality of life aspects of being diagnosed and living with prostate cancer

Prostate cancer is largely a heterogenous disease, ranging from almost harmless to highly aggressive. Most men are diagnosed with favorable-risk disease with a long life expectancy even without treatment. The risk of overdiagnosing and overtreating these men is substantial, with reduced quality of life as a result. In this thesis, we study the diagnostics of, and the quality of life for men with prostate cancer. In paper I, we studied satisfaction with care among men with low-risk prostate cancer in a nationwide, population-based setting and found a high overall satisfaction with care. Information and participation in decision-making were of great importance for satisfaction. However, men on active surveillance reported lower overall satisfaction with care, suggesting that they need more information and to be more participatory in their care. In paper II, we investigated choice and adherence to active surveillance and found that a doctor’s recommendation was the most important factor for choosing active surveillance as the primary treatment strategy. A rising PSA was the most common cause for diverting from active surveillance to curative treatment, even though PSA alone is a poor marker for disease progression. In paper III, we explored lifestyle changes after a prostate cancer diagnosis and a possible association between lifestyle changes and quality of life. We found that a considerable proportion of men change their lifestyle after a prostate cancer diagnosis and that a positive lifestyle change was associated with a higher quality of life. However, men with poorer functional outcomes after treatment were less likely to make lifestyle changes, suggesting that these men need better support and rehabilitation. In paper IV, we used a new simulation model to evaluate the benefit and harm of the increased PSA-driven diagnostic activity that has occurred over the last 30 years. We found that the increased diagnostic activity has resulted in a modest decrease in prostate cancer specific mortality but at the cost of substantial overdiagnosis and overtreatment. To conclude, this thesis provides information on factors to improve satisfaction with care, increase adherence to active surveillance, and to engage in positive lifestyle changes, possibly contributing to a higher quality of life