Experiences of signs and symptoms among men with advanced prostate cancer

Sammanfattning: Background: In the past decade, thanks to improved treatment options, many men with metastatic prostate cancer now survive longer than they would have before. The PSA value is often followed during the entire disease trajectory as a sign, but in late phases, symptom burden, quality of life (QoL), and/or psycho-social factors are assigned more importance in treatment decisions and evaluations. From the men´s perspective the change of the clinical importance of the PSA value in assessment of treatment effect and as a sign of disease progression may not be obvious and they may therefore experience distress about values with little clinical relevance. When having a life-limiting disease, symptom management also plays a vital role in the balance between prolonging life and QoL but there are few studies describing symptom burden in a real-world situation in these men. In order to support these men, it is important to gain an understanding from the men‘s perspective of their experiences and interpretations of signs and symptoms. Aim: The overall aim of this thesis project was to study signs and symptoms in relation to progression of the disease in men with advanced prostate cancer. The underlying hypothesis was that signs and symptoms may be experienced as distressing as markers of potential progression influencing QoL in advanced prostate cancer. Methods: Both quantitative and qualitative research approaches were used. The thesis is based on data from two different overall projects: a survey sent to all members of the Swedish Prostate Cancer Federation (SPCF) and the PROstate Cancer-Experiences and Expectations During treatment (PROCEED) project. In study I descriptive statistics and logistic regression analysis were used to analyze self-reported questionnaires regarding distress and PSA values. In study II content analysis was used to analyze longitudinal interview data. In study III, descriptive- and linear regression analysis were used to describe symptoms, symptom dimensions and symptom burden, and to investigate associations between QoL and symptom burden. In study IV, descriptive statistics regarding symptoms, symptom dimensions and symptom burden were described at five timepoints. To analyze changes over time for symptom burden, linear mixed modeling was applied. Results: Men with advanced prostate cancer experience an uncertain illness situation when living with a life-limiting disease. They used signs and symptoms to make sense of their situation. Many of the men were preoccupied with the PSA values as the sign that they described as most important. Over time, as some men experienced more and more symptoms, the importance of the PSA values decreased, and the symptoms and consequences of the symptoms became more important to the men. Some men had a lot of symptoms when starting treatment, mostly physical and not so often psychological symptoms. Except for distress in relation to increased levels of PSA, many men did not report feelings such as worry or fear, even if most of them knew that they had a limited time to live. The different symptoms varied in dimensions of frequency, severity and distress, and sexual problems were most reported, followed by pain and lack of energy. The physical symptoms worsened significantly over time while psychological symptoms and number of symptoms did not. Conclusion: When living with progressing advanced prostate cancer, an uncertain illness situation was described. In this uncertainty, signs and symptoms were used to make sense of their situation. To understand the men’s interpretations of signs and symptoms is important since misunderstandings or misinterpretations may cause unnecessary distress and reduced QoL in this late phase of the disease. The men experienced mostly physical symptoms, which also worsened over time. Sexual problems were common and may need to be acknowledged more, even if the underlying causes is difficult to resolve, support in handling the problem could be beneficial. Pain and fatigue were also common and were experienced as distressing, and some symptoms may have been insufficiently managed. These findings may help health care professionals to understand the disease from the men’s perspective. Enhancing QoL is also the main goal for palliative care and a palliative approach early in the disease trajectory in the oncology outpatient setting could benefit these men.