Information needs, psychological distress, and coping during the diagnostic phase of prostate cancer : A Mixed-methods study

Abstract

Background: Prostate cancer (PCa) is the second most common cancer in men worldwide, accounting for about 15% of all cancers among men. In Norway, patients are referred to specialist healthcare services for diagnostic evaluation in cases of an elevated prostate-specific antigen (PSA) level and/or a suspicious digital rectal examination finding. According to national guidelines, the PSA test should be conducted only after thorough consideration of the potential harms and benefits. In 2017, general practitioners in the relevant region of Norway were instructed to use the Stockholm3 test instead of the PSA test as the standard procedure for diagnosing PCa. To reduce unnecessary non-medical delay in the diagnostic process and initiation of treatment, patients are referred to a standardised PCa care pathway. Previous research has indicated that men may experience frustrations and uncertainty when confronted with an elevated PSA level and further diagnostic evaluations. The PSA test and subsequent prostate biopsy are suggested to be associated with hidden psychological costs, even in patients who are not eventually diagnosed with PCa. In cases of a potential cancer diagnosis, a cognitive appraisal process is initiated in response to an unknown future. Appraisal and applied coping strategies may influence the quality of life of men with PCa and are of importance for emotional adjustment. However, knowledge about patients’ perception of information, psychological distress, and coping during the diagnostic phase of PCa is limited. Objectives: The overall aim of this thesis was to develop knowledge concerning patients’ perceptions of information, psychological distress, and coping during the diagnostic phase of PCa. The objectives were as follows: 1. To explore men`s perception of information and their possible emotional strain in the diagnostic phase of prostate cancer (study I) 2. 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 (study II). 3. To investigate the associations between patient characteristics, psychological distress, and coping in the diagnostic phase of prostate cancer. (study III). Methods: This thesis utilised a convergent mixed methods design. 1) A qualitative explorative interview study was conducted among patients evaluated for PCa (n = 10). 2) A comparative convergent mixed methods study was performed to compare the perceptions of information and psychological distress between a PSA group (quantitative analysis: n = 130, qualitative analysis: n = 10) and a Stockholm3 group (quantitative analysis: n = 120, qualitative analysis: n = 10) during the diagnostic phase of PCa. 3). A cross-sectional multicentre study was conducted to investigate the associations between patient characteristics, psychological distress, and coping during the diagnostic phase of PCa (n = 250). Results: The patients had different information and support needs. Although they did not report severe symptoms of psychological distress, their emotions seemed to fluctuate. The period leading up to a possible PCa diagnosis could be perceived as emotionally demanding (study I). The patients in the Stockholm3 group received more satisfactory information from their general practitioner than did those in the PSA group. A subgroup of patients experienced symptoms of anxiety and depression (studies II and III). However, the qualitative analysis revealed that the patients might not have defined their emotions as anxiety or worry but still experienced psychological distress that affected their well-being (study II). A negative correlation was found between ageing and symptoms of anxiety. Poorer self-reported health was associated with more symptoms of both anxiety and depression, expanded use of social support, and wishful thinking. Increased symptoms of anxiety and depression were associated with increased use of all five measured coping strategies. Most patients appraised their situation as a challenge. The patients who appraised their situation as a threat experienced more symptoms of anxiety and depression and utilised more emotion-focused coping than did the patients who appraised their situation as a challenge or benign (study III). Conclusions: This thesis demonstrated that a significant proportion of patients had unmet information needs during the diagnostic phase of PCa. The thesis was conducted in the context of the implementation of the Stockholm3 test, contributing new knowledge. The mandatory questions related to the Stockholm3 test may have facilitated communication about the test and the challenges of diagnosing PCa. The patients displayed a wide range of emotions towards the suspicion of PCa, including psychological distress. Threat appraisal was related to increased symptoms of anxiety and depression and the use of emotion-focused coping. These findings reveal focal points for healthcare providers to address when identifying patients in need of additional support and information.