Objective To explore men`s perception of information and their possible emotional strain in the diagnostic phase of prostate cancer. Design, setting, patients A qualitative explorative research design was employed. Data were collected from June to November 2017. The study was set at a urological outpatient clinic at a university hospital in Norway. Semi-structured interviews were conducted with ten men who had been examined for prostate cancer. Interviews were analyzed using Systematic Text Condensation (STC). Results The analysis revealed three themes. The theme ‘Different needs and perceptions of information’ illustrated that information should be personalized. Despite different information needs, insufficient information about prostate cancer may prevent some men from being involved in decisions. The theme, ‘A discovery of not being alone’, indicated that a sense of affinity occurs when men realize the commonality of prostate cancer. Some men benefited from other men’s experiences and knowledge about prostate cancer. The last theme ‘Worries about cancer and mortality’ showed that the emotional strain was affected by men’s knowledge of cancer and the received information. Men expressed conflicting feelings toward prostate cancer that could be difficult to express. Conclusions The findings indicate that men in the diagnostic phase of prostate cancer are not a homogeneous group, but need personalized information. Some men may benefit from other men’s experiences and support. Men’s emotional strain can affect their communication about prostate cancer, which should be acknowledged. Procedures that identify patients’ information needs early on should be an integrated part of the diagnostic phase of prostate cancer. KEY POINTS Knowledge about men’s information needs and possible emotional strain in the diagnostic phase of prostate cancer are limited. Men with suspected prostate cancer have different preferences and information needs; however, insufficient information prevents men from participating in decisions. Men experience a sense of affinity with other men affected by prostate cancer, and some men benefit from exchanging experiences. Men consider prostate cancer as a less aggressive type of cancer but may experience emotional strain.
Background Previous studies indicate that men experience frustration and uncertainty when confronted with an elevated prostate specific antigen (PSA) test and during further diagnostics for prostate cancer. The novel Stockholm3 test is an algorithm-based test that combines plasma protein biomarkers, genetic markers and clinical variables in predicting the risk of PCa. The test was introduced in a western part of Norway as a new tool for detecting prostate cancer. This study aimed to explore and compare men’s perception of information and possible experience of distress between a PSA group and a Stockholm3 group during the diagnostic phase of prostate cancer. Methods This study is a part of the trailing research evaluating the impact of the change from PSA to Stockholm3. It is a multicenter study using a comparative mixed method design. Data were collected in a PSA group (n = 130) and a Stockholm3 group (n = 120) between 2017 and 2019. Quantitative data were collected using questionnaires and qualitative data were collected using semi-structured interviews (n = 20). The quantitative and qualitative data were analysed and compared separately and then merged in a side-by-side discussion. The study adheres to the GRAMMS guidelines for reporting mixed-methods research. Results Compared with the PSA group, men in the Stockholm3 group reported that the information from the general practitioners was better. Similarly, men in the Stockholm3 group were more likely to indicate that they had received sufficient information regarding how examinations would be conducted. No differences were found between the groups regarding waiting time and distress. Three themes emerged from the qualitative analysis of the two groups: “Information affects the experience of comprehension”, “Stepping into the world of the healthcare system”, and “Periodically feelings of distress”. Conclusion The Stockholm3 test may facilitate the provision of information to patients. However, some patients in both groups experienced distress and would benefit from more information and additional support from healthcare professionals. Routines that ensure sufficient information from the interdisciplinary healthcare team should be of priority during the diagnostic phase of prostate cancer in order to provide patients with predictability and to avoid unnecessary distress.
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