Patient Reported Outcomes in the process of being diagnosed with Prostate Cancer

The thesis aimed to investigate newly diagnosed patients’ perspectives on how prostate cancer (PC) affected their health-related quality of life (HRQoL) within the first year after diagnosis. We used multiple methods; systematic review, prospective study, and qualitative interview study, to investigate this.
Studie 1: Health-related Quality of Life in the First Year after a Prostate Cancer Diagnosis: a Systematic Review.
There is limited knowledge surrounding how newly diagnosed PC experience the first year after diagnosis. The various treatment options available, each impacting HRQoL differently, make it imperative to understand how each treatment affects patients, to be able to guide treatment decisions.
Therefore this study aim to investigate health-related quality of life in the first year after a prostate cancer diagnosis
We found that active surveillance seems to have similar to no impact on HRQoL, radical proctectomy negatively impacts urinary function, external beam radiotherapy mostly has a negative impact on bowel function, and brachytherapy negatively impacts urinary function. Across treatment types, sexual function was the most negatively affected domain, and emotional function was the domain with the most improvement from baseline to 12 months.
Studie 2: Health-related Quality of Life in Older Men Newly Diagnosed with Prostate Cancer: a Prospective Study
Most individuals living with PC are ≥70 years or older. This number is expected to increase due to longer life expectancies and increased focus on screening for PC. However, little is known about how a PC diagnosis affects the HRQoL of older men since they are often excluded from clinical trials. We wanted to compare the group of older men, newly diagnosed with PC with older men without PC to assess how the diagnosis affected their HRQoL. Therefore, this study aimed to assess HRQoL of older men ≥70 of age, newly diagnosed with PC.
We found that older men diagnosed with prostate cancer during the first year have a decline in the sexual and hormonal domains when compared to the control group. Despite this, they had good overall health-related quality of life.
Studie 3: Patients’ Experiences of Completing Patient-reported Outcomes in Clinical trials: An Interview Study .
This study aimed to explore how the use of ePROs affected older patients during the first year following diagnosis. Most of our knowledge about patients’ experiences with ePROs comes from active ePRO, where clinicians use individual patients’ responses to improve their symptoms and treatment plans. In contrast, ePROs in clinical trials is a passive data collection method, where patient responses are aggregated for outcomes. Individual patients do not receive feedback on their responses and it is currently not clear in existing evidence, how it is experienced to be a part of ePRO in clinical trials. Therefore, we aimed to explore how patients (>70 years of age) experience completing ePRO in clinical trials over a period of time, as well as what motivates and demotivates them.
We found that while assigning a numerical rating to an individual’s HRQoL can be challenging, using ePROs enhances comprehension of both disease and symptoms, improving patients’ vocabulary and creates desire for greater engagement and holistic care. However, a lack of feedback can decrease the participants’ motivation to continue completing questionnaires during clinical trials, potentially contributing to dropouts in PRO studies. Therefore, in future clinical trials using ePROs, researchers and healthcare professionals must prioritise using patients’ individual responses to inform their treatment