BACKGROUND AND PURPOSE: For the most advanced stage of metastatic castration-resistant prostate cancer (mCRPC), several life-prolonging treatments have become available over the past decade. Treatment decision-making (TDM) and experiences in this phase are yet to be studied. Hence, this study aimed to describe men's satisfaction with TDM and treatment experiences during the first 12 months of a life-prolonging treatment of mCRPC.

PATIENTS AND METHODS: This prospective study included 104 men with mCRPC who started and remained on the same life-prolonging treatment for 12 months. They received a questionnaire on TDM, treatment experiences, and well-being every 3 months. Correlation analyses explored associations between satisfaction with TDM at baseline and treatment experiences and well-being over time.

RESULTS AND INTERPRETATION: The participants (median age: 77 years) generally reported high satisfaction with physician- and nurse communication and confidence/trust at baseline (>55% reported the highest satisfaction in all questions), but lower satisfaction with communication regarding how the treatments could affect them - up to 40% reported not having talked about that at all. Treatment experiences and physical- and emotional well-being remained stable over time. Associations were found between satisfaction with TDM at baseline and how they rated the treatment as a whole at six months, and well-being at six and 12 months. In mCRPC, men's TDM preferences need to be explored, and shared decision-making needs to be facilitated when considering treatment. Furthermore, clinicians need to discuss how the treatment might affect patients' everyday lives when discussing life-prolonging treatments with them.

BACKGROUND: People with multiple sclerosis (PwMS) face health and social challenges of living with a chronic and potentially disabling condition. To disclose or conceal MS at work may critically affect individuals' work situation, career opportunities, and health. PwMS may experience a dilemma when assessing if the possible benefits of disclosing the diagnosis outweigh the possible risks. However, concealing in the long-term may have health implications and prevent opportunities for support and work adjustments. Few studies have examined what drives PwMS to disclose or conceal MS at work and the consequences of these ways of managing MS.

OBJECTIVES: To explore the reasons PwMS report for disclosing and/or concealing their MS diagnosis in the workplace, as well as the consequences they have experienced.

METHODS: A web-based survey of PwMS was conducted in 2021. All individuals aged 20-50 listed in the Swedish MS registry were invited to participate. The response rate was 52% and among these participants, 3,810 (86%) completed questions regarding workplace disclosure and/or concealment of MS. Free-text responses on these topics were analyzed using inductive content analysis.

RESULTS: It was common to disclose MS in the workplace (85%). Identified drivers for disclosure and concealment related to four categories: Work-related, Social, Personal and Circumstantial. Work-related drivers focused on employment or protecting one's career, and changing one's work situation versus maintaining it. Social drivers included the need for support, addressing or preventing stigma, and being considerate of others. Personal drivers were linked to moral values/personal beliefs and processing of the diagnosis. Circumstantial drivers related to involuntary or unforeseen events, timing factors, one's medical condition and external opinion/advice. Identified consequences for disclosure and concealment related to three categories: Work-life, Social, and Personal. Work-life consequences included work arrangements, and career opportunities. Social consequences were linked to MS awareness, stigma, interactions and social support, as well as dynamics of work relationships. Personal consequences involved levels of disease acceptance, and attitudes toward managing MS.

CONCLUSION: PwMS often described the question of disclosure as challenging and navigated it with caution, as both disclosure and concealment can yield favorable and unfavorable outcomes.

BACKGROUND: The COVID-19 pandemic led to vast changes in working life and conditions in which we work. These changes may affect people with multiple sclerosis (PwMS) differently. We aimed to describe the working situation of PwMS during the COVID-19 pandemic and the pandemic's impact on their working lives.

METHODS: All individuals aged 20-50 listed in the Swedish Multiple Sclerosis Registry were invited to participate in an online survey in 2021. Closed and open-ended responses linked to individual-level register data were used in this exploratory mixed-methods study. Differences in the proportions reporting specific impacts were assessed with chi-square tests by sex, MS severity, education, and profession. The open-ended answers were analysed through content analysis.

RESULTS: Over 8500 PwMS were invited (52% response rate). We included the 3887 respondents who answered questions about the impact of the pandemic on working life. Most (93.7%) reported being in paid work. An impact of the ongoing pandemic to one's daily occupation was reported by 26.2%, with different characteristics observed across the impacts. Four categories of type of answers were identified from the open-ended answers: Direct impact on one's occupation, Disclosing or concealing MS in the workplace, Worry and uncertainty, and Broader impact to life situation.

CONCLUSIONS: PwMS navigated the pandemic by interrupting as well as continuing their working lives. Many PwMS reported that the pandemic did not affect their work situation. However, the reported impacts differed among the participants and a sense of uncertainty and worry was often underlying their statements. Lessons from the pandemic may support future work participation.

Marie Cederschiöld högskola (MCHS) och Sophiahemmet Högskola (SHH) samarbetar kring en gemensam seminarieserie i publiceringsetik. Seminarierna vänder sig till högskolornas doktorander, forskare och bibliotekarier. Med liten arbetsinsats från en grupp med forskare och bibliotekarier har vi en bra samverkan både mellan våra högskolor och mellan olika professioner på högskolorna.

OBJECTIVES: Despite rapid expansion of treatments for metastatic castration-resistant prostate cancer (mCRPC) and the importance of symptom management for enhancing quality of life, few studies have focused on men's experiences of symptom burden over time when receiving one or more lines of treatment in a real-world situation in this phase. The aim was to investigate changes in the multidimensional symptom burden during the first year of life-prolonging treatment of mCRPC.

METHODS: Longitudinal data from the first year of life-prolonging treatment for 134 men with mCRPC were used. Symptoms were measured with the multidimensional Memorial Symptom Assessment Scale. Data are presented with descriptive statistics, and changes in symptom burden (physical, psychological and number of symptoms) were analysed using linear mixed modelling.

RESULTS: On average, the men had approximately 10 (0-31) symptoms at inclusion and 12 (0-33) at the last time point. Lack of energy and sweats were the two most reported symptoms at every time point. Sexual problems had the highest scores in all dimensions (frequency, severity, distress). Regarding pain, the distress score was higher than the scores for frequency and severity at t1-t4. Physical symptom burden and the number of symptoms changed significantly over time, towards a higher symptom burden. Psychological symptom burden did not change significantly over time.

CONCLUSION: The different dimensions of physical symptoms in men treated for mCRPC need to be more acknowledged. Early integration of a palliative care approach could possibly help in enhancing symptom management and quality of life for these men.

BACKGROUND: Men with metastatic castration-resistant prostate cancer (mCRPC) have an incurable disease. Along with prolonging life, symptom management is one of the main goals with treatment. This is also important from a palliative care perspective where the life prolonging outcomes should be balanced with quality of life (QoL) in this late phase. It is also essential in symptom management to view different dimensions of symptoms, for example how severe or distressing symptoms are, to support best QoL. Therefore, more knowledge is needed about the symptom experience when these treatments are initiated and thus the aim of this study was to describe different dimensions of symptoms in men with mCRPC starting their first-line of life-prolonging treatment, and to describe the association between symptom burden and QoL.

METHODS: Baseline data from a prospective longitudinal study of 143 men with mCRPC starting their first-line life-prolonging treatment were used. Symptoms were measured using the Memorial Symptom Assessment Scale (MSAS) and global QoL was measured by the EORTC QLQ C-30. Data was analyzed using descriptive- and multivariable linear regression analyses.

RESULTS: On average, the men had more than 10 symptoms (range 0-31 of 33). 50% or more reported sweats, lack of energy, pain, problems with sexual activity and sexual desire. The symptoms they reported as most severe, or most distressing were not always the ones that were reported as most frequent. There was an association between QoL and physical symptoms, and also between QoL, and analgesic use and prostate-specific antigen (PSA) values.

CONCLUSION: Even if some men with mCRPC report many symptoms, the dimensions of severity and distress levels vary, and the most frequent symptoms was not always the most burdensome or distressing. There was an association between high physical symptom burden and QoL, suggesting that it is not the number of symptoms that affects QoL but rather the subjective perceived impact of the physical symptoms experienced. The knowledge of how men with mCRPC experience and perceive their symptoms may help health care professionals in symptom management aiming to improve QoL, which is a cornerstone in integrating early palliative care.