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.

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.

BACKGROUND: The Surprise Question (SQ) is a common method aimed at identifying frail patients who need serious illness conversations to integrate a palliative approach. However, little is known about whether the SQ identifies patients on hemodialysis who perceive that they are declining or have low health-related quality of life (HRQoL)-important aspects when considering the need for serious illness conversations.

OBJECTIVE: To explore how nurses and physicians' responses to the SQ are associated with patients' self-reported HRQoL.

DESIGN: Cross-sectional study.

SUBJECTS: In total, 282 patients on hemodialysis were included.

MEASUREMENTS: One nurse and one physician responded to the SQ for each patient. The patient-reported HRQoL was measured with the RAND 36-Item Health Survey 1.0 (RAND-36) and the EuroQual vertical visual analogue scale (EQ-VAS) from the EuroQual-5 Dimension Questionnaire (EQ-5D).

RESULTS: Nurses' responses "no, not surprised" to the SQ were associated with patient-reported worsened health compared to one year ago (RAND-36), and lower perceived overall health (EQ-VAS). Physicians' responses "no, not surprised" were associated with lower overall health and lower physical functioning. Patient-reported pain, general health, fatigue, and emotional and social aspects were not associated with responses to the SQ.

CONCLUSIONS: The findings indicate that the SQ identifies patients on hemodialysis who report low overall health and low physical functioning. However, the SQ did not identify patients who reported pain, emotional problems, or fatigue, which are also important aspects to consider in identifying needs for serious illness conversations, symptom management, and to be able to integrate a palliative approach.

INTRODUCTION: The surprise question (SQ) "Would I be surprised if this patient died within the next xx months" can be used by different professions to foresee the need of serious illness conversations in patients approaching end of life. However, little is known about the different perspectives of nurses and physicians in responses to the SQ and factors influencing their appraisals. The aim was to explore nurses' and physicians' responses to the SQ regarding patients on hemodialysis, and to investigate how these answers were associated with patient clinical characteristics.

METHODS: This comparative cross-sectional study included 361 patients for whom 112 nurses and 15 physicians responded to the SQ regarding 6 and 12 months. Patient characteristics, performance status, and comorbidities were obtained. Cohen's kappa was used to analyze the interrater agreement between nurses and physicians in their responses to the SQ and multivariable logistic regression was applied to reveal the independent association to patient clinical characteristics.

FINDINGS: Proportions of nurses and physicians responding to the SQ with "no, not surprised" was similar regarding 6 and 12 months. However, there was a substantial difference concerning which specific patient the nurses and physicians responded "no, not surprised", within 6 (κ = 0.366, p < 0.001, 95% CI = 0.288-0.474) and 12 months (κ = 0.379, p < 0.001, 95% CI = 0.281-0.477). There were also differences in the patient clinical characteristics associated with nurses' and physicians' responses to the SQ.

DISCUSSION: Nurses and physicians have different perspectives in their appraisal when responding to the SQ for patients on hemodialysis. This may reinforce the need for communication and discussion between nurses and physicians to identify the need of serious illness conversations in patients approaching the end of life, in order to adapt hemodialysis care to patient preferences and needs.

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.

OBJECTIVE: A variety of interventions aiming to influence physicians' sickness certification practice have been conducted, most are, however, not evaluated scientifically. The aim of this systematic literature review was to obtain updated knowledge about interventions regarding physicians' sickness certification practice and to summarize their possible effects, in terms of sickness absence (SA) or return to work (RTW) among patients.

METHODS: We searched PubMed and Web of Science up through 15 June 2020 and selected peer-reviewed studies that reported effects of controlled interventions that aimed to improve physicians' sickness certification practice and used SA or RTW among patients as outcome measures. Meta-analyses were conducted using random-effect models.

RESULTS: Of the 1399 identified publications, 12 studies covering 9 interventions were assessed as relevant and included in the review. Most (70%) were from the Netherlands, two had a controlled, and seven a randomized controlled study design. All interventions included some type of training of physicians, and two interventions also included IT-support. Regarding the outcomes of SA/RTW, 30 different effect measures were used. In the meta-analyses, no statistically significant effect in favor of the interventions was observed for having any RTW (i.e. first, partial, or full) nor full RTW.

CONCLUSIONS: The individual studies showed that physicians' sickness certification practice might be influenced by interventions in both the intended and non-intended direction, however, no statistically significant effect was indicated by the meta-analysis. The included studies varied considerably concerning intervention content and effect measures.KEY POINTSThe knowledge is very limited regarding the content of interventions directed to physician's sickness certification practiceThe identified interventions included some type of training of physicians, and some of them also included IT-support for physiciansThere was a great heterogeneity among the interventions concerning effect measures used regarding return to work among patientsThe individual studies showed that physicians' sickness certification practice might be influenced by interventions in both intended and non-intended directions, however, the overall meta-analysis did not indicate an effect.