Signs and symptoms in relation to progression, experiences of an uncertain illness situation in men with metastatic castration-resistant prostate cancer-A qualitative study.

OBJECTIVE: Signs and symptoms are important in monitoring prostate cancer, but there is a lack of understanding about the men's interpretation of signs and symptoms in relation to disease progression in advanced phases of the disease. The aim was to illuminate the experience of signs and symptoms in relation to disease progression in men with metastatic castration-resistant prostate cancer (mCRPC). METHOD: Thirty longitudinal interviews were conducted with 11 men undergoing life-prolonging treatment for mCRPC. Conventional content analysis was used. RESULTS: The results illuminate an uncertainty that the men experience when interpreting signs and symptoms. The overarching theme was The experience of an uncertain illness situation within the framework of progression, with four subthemes: Symptoms triggering thoughts about disease progression; Making sense of signs, also in the absence of symptoms; Making sense of symptoms during treatment; Progression triggering thoughts about the remainder of life. CONCLUSION: In the uncertain illness situation, the men strive to make sense of signs and symptoms based on previous experiences and in relation to disease progression. Understanding the men's perspectives on signs and symptoms in this late phase may help health care professionals communicate about disease progression considering the balance between treatment outcome and quality of life.

Identification of early symptoms and changes in QoL and functioning among men with primary localized prostate cancer who later develop metastases: A matched, prospective study.

OBJECTIVE: To identify early symptoms and changes in QoL among men with primary localized prostate cancer (PC) who later develop metastases. METHODS: From an ongoing prospective study of 3.885 men with localized PC, primarily treated with radiotherapy (RT), a subsample of men developing metastatic PC (mPC) following the first year after the start of RT and that had died during the follow-up (mPC group, n = 107) were matched against men who did not develop metastases (non-mPC group, n = 214). Data were collected using the EORTC QLQ-C30 and PCSS instruments. Non-parametric tests were performed for comparisons at baseline, end of RT, 3 months, and 1, 2, 3, and 5 years after RT. RESULTS: The final sample consists of 317 men (mPC n = 106; non-mPC n = 211) who had completed at least one questionnaire. Initially, symptom levels were generally low and QoL and functioning high in both groups. An increasing difference between the groups was found, where the mPC group gradually deteriorated from the 2-year follow-up. Significant differences were found for several outcomes at 3 and 5 years. In a sensitivity analysis, where metastatic patients were removed from the time-point of verified metastases, most differences did not remain significant. Significant deterioration over time was seen within both groups for some outcomes. SIGNIFICANCE OF RESULTS: The results indicate that unmet supportive needs occur over time among these men. Worsening QoL or functioning and symptoms may be difficult to recognize when the development is gradual over several years, and with various access to systematic follow-up in late phases. This highlights the need for continuous monitoring of PC patients to detect needs for supportive interventions early and throughout the disease course, also among those with non-metastatic disease who have undergone curatively intended treatment.

Midwives' experiences of using the Mindfetalness method when talking with pregnant women about fetal movements.

BACKGROUND: Information given to pregnant women about fetal movements is important in maternity care and decreased fetal movements is associated with fetal growth restriction and stillbirth. The fetal movement pattern is different for every fetus and women perceive different types of movements. Mindfetalness is a self-assessment method for a woman to use to become familiar with her unborn baby's fetal movement pattern. AIM: We aimed to explore midwives' perceptions about informing pregnant women about fetal movements and their experiences of working with Mindfetalness in their daily work. METHODS: A web-questionnaire was distributed to midwives who participated in a randomized controlled trial evaluating Mindfetalness, a method for the observation of fetal movements. In total, 67 maternity clinics in Stockholm, Sweden, were randomized to Mindfetalness or routine care. Of the 144 midwives working in maternity clinics randomized to Mindfetalness, 80% answered the questionnaire. FINDINGS: The midwives thought that the leaflet about Mindfetalness was supportive in their work when informing women about fetal movements and the majority wanted to continue to distribute the leaflet when the trial ended. The midwives also expressed that the study increased their own knowledge about fetal movements. Women embraced the information about Mindfetalness positively and appreciated the written material. The midwives thought that talking about fetal movements in maternity care is an important but challenging task. CONCLUSION: Mindfetalness is a useful tool to use in maternity clinics when informing pregnant women about fetal movements. The written information was appreciated by both pregnant women and midwives.

Facing life-prolonging treatment: The perspectives of men with advanced metastatic prostate cancer - An interview study.

PURPOSE: Several life-prolonging treatment options have recently become available for metastatic castration-resistant prostate cancer. However, research regarding patient experiences while undergoing these treatments is scarce. The aim was to explore the perspectives of men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer. METHOD: Qualitative interviews were conducted with 16 men as they were starting, undergoing or had completed their first life-prolonging treatment. Interpretive description was used for analysis. RESULTS: The results illuminate the complexity of facing life-prolonging treatment, with interlaced dimensions beyond just the outcome, and where the men described other dimensions of their lives in relation to the treatment. The results are presented as 4 themes; Considering treatment when the remainder of life is at stake, Preparing for the life-prolonging treatment after deciding to go through with it, Considering the prospect of the life-prolonging treatment not being successful and Reflecting on death and dying in the light of a life-limiting illness. CONCLUSIONS: The quality and content of the remainder of life are central for men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer. This is important when weighing desired treatment outcomes against side effects, and when reflecting upon whether going through with treatment would be worth it or not. The results illuminate the importance of encouraging men at this stage to express expectations, hopes and fears regarding the treatment and the future when considering life-prolonging treatments. Nurses working with these patients are important in the decision-making process and in evaluating treatments, to detect needs for interventions.

Quality of life in men with metastatic prostate cancer in their final years before death - a retrospective analysis of prospective data.

BACKGROUND: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men's QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death. METHODS: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants' QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6-18 months and > 18 months before death. RESULTS: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006. CONCLUSION: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.