Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin-insights from a Swedish population-based survey.

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.

Work Adjustments by Types of Occupations Amongst People with Multiple Sclerosis: A Survey Study.

PURPOSE: To explore the occurrence of work adjustments for people with multiple sclerosis (MS) across types of occupations (managerial, office, and manual workers). METHODS: All working-aged (20-50 years) residents in Sweden diagnosed with MS were invited to participate in a web-based survey in 2021. Responses were linked to individual-level nationwide registers. Descriptive analyses were conducted to compare sociodemographic and clinical variables across occupations as well as other responses. The odds ratio of having any adjustment at work was determined using multinomial logistic regression. RESULTS: From all 4412 respondents (52% response rate), 3313 employees were included. The majority were women (72%) and had low (24.2%) or mild disease severity (44.7%). Nevertheless, different work adjustments across occupations were observed. Compared to the other occupations, office workers reported more invisible symptoms, more work adjustments and considered adapted schedules as the most important adjustment. On the contrary, more managers reported having no limiting symptoms and consequently, disclosed their diagnosis less often. They also reported having fewer work adjustments and more opportunities to modify their work than office and manual workers. Manual workers had a higher likelihood to report needing more support at work than office workers and managers. Further, a higher likelihood of having work adjustments was associated with progressive MS, higher MS severity, and invisible symptoms. CONCLUSION: A more severe clinical profile of MS was associated with having work adjustments. The physical demands and responsibilities of an occupation play an important role when requesting and getting work adjustments amongst employees with MS.

Self-reported restrictions in different life domains and associated factors among people with multiple sclerosis in Sweden.

BACKGROUND AND PURPOSE: The heterogeneous symptoms of multiple sclerosis (MS) can considerably impact the lives of people with MS (PwMS). The aim of this study was to describe the extent of restrictions in different life domains that PwMS experience in relation to their symptoms and level of disability. METHODS: A cross-sectional survey was conducted among working-age PwMS in Sweden. The 4052 participants who answered the questions on restrictions in work and private life domains (family, leisure activities, and contact with friends/acquaintances) were included. Predictors of restrictions in the four domains were determined through multinomial logistic regression. RESULTS: Approximately one-third of the PwMS reported no restrictions in the domains of work (35.7%), family (38.7%), leisure activities (31.1%) or contact with friends/acquaintances (40.3%), the remaining participants reported moderate to severe restrictions. Tiredness/fatigue was the most commonly reported most-limiting symptom (49.5%). PwMS with Expanded Disability Status Scale (EDSS) scores of zero reported restrictions in life domains ranging from 39.6% (friends/acquaintances) to 45.7% (leisure activities). Age, sex, education, type of living area, MS type, type of most-limiting symptom, and EDSS score predicted restrictions in work and private life domains. CONCLUSIONS: Most PwMS reported similar levels of restrictions in both their work and private lives. Restrictions in these life domains were also reported by PwMS with low disability levels (EDSS = 0) and were often associated with invisible symptoms such as fatigue. Even in a contemporary MS cohort, close to 90% of PwMS report limitations due to MS.

Exploring experiences of implementing standardized cancer patient pathways within investigatory units - a qualitative study.

BACKGROUND: In the implementation of standardized cancer patient pathways (CPPs), the investigatory units, endoscopy, radiology and pathology, are crucial to ensure an eventual cancer diagnosis. However, when evaluating the implementation of CPPs, little attention has been paid to the healthcare professionals working in these units. The aim of this study was to explore experiences of the implementation of CPPs among health professionals in investigatory units. METHODS: This descriptive qualitative study included 55 health professionals working in investigatory units. Participants were interviewed in 2017-2018, and data were analysed using thematic analysis. RESULTS: The health professionals reported benefits, facilitators and challenges when describing their experiences of implementing CPPs. Benefits included that CPP improved collaboration and increased focus on the patients. Facilitators in the implementation process included pre-existing well-functioning work processes and having supportive functions (e.g. coordinators). Challenges included the lack of staff and clinical equipment, as well as unjustified time-slots and incorrect referrals. CONCLUSIONS: The findings show that most health professionals working in investigatory units' experience benefits with the implementation of CPP, but the lack of resources was especially hard to overcome.

Determinants for the use and de-implementation of low-value care in health care: a scoping review.

BACKGROUND: A considerable proportion of interventions provided to patients lack evidence of their effectiveness. This implies that patients may receive ineffective, unnecessary or even harmful care. However, despite some empirical studies in the field, there has been no synthesis of determinants impacting the use of low-value care (LVC) and the process of de-implementing LVC. AIM: The aim was to identify determinants influencing the use of LVC, as well as determinants for de-implementation of LVC practices in health care. METHODS: A scoping review was performed based on the framework by Arksey and O'Malley. We searched four scientific databases, conducted snowball searches of relevant articles and hand searched the journal Implementation Science for peer-reviewed journal articles in English. Articles were included if they were empirical studies reporting on determinants for the use of LVC or de-implementation of LVC. The abstract review and the full-text review were conducted in duplicate and conflicting decisions were discussed until consensus was reached. Data were charted using a piloted data charting form and the determinants were inductively coded and categorised in an iterative process conducted by the project group. RESULTS: In total, 101 citations were included in the review. Of these, 92 reported on determinants for the use of LVC and nine on determinants for de-implementation. The studies were conducted in a range of health care settings and investigated a variety of LVC practices with LVC medication prescriptions, imaging and screening procedures being the most common. The identified determinants for the use of LVC as well as for de-implementation of LVC practices broadly concerned: patients, professionals, outer context, inner context, process and evidence and LVC practice. The results were discussed in relation to the Consolidated Framework for Implementation Research. CONCLUSION: The identified determinants largely overlap with existing implementation frameworks, although patient expectations and professionals' fear of malpractice appear to be more prominent determinants for the use and de-implementation of LVC. Thus, existing implementation determinant frameworks may require adaptation to be transferable to de-implementation. Strategies to reduce the use of LVC should specifically consider determinants for the use and de-implementation of LVC. REGISTRATION: The review has not been registered.

Primary care physicians' views of standardised care pathways in cancer care: A Swedish qualitative study on implementation experiences.

OBJECTIVE: Primary care physicians (PCPs) recently started using standardised care pathways (PCPs) to refer patients to specialists for diagnostics in Sweden. The aim of the current study is therefore to examine PCPs views of implementing standardised care pathways (SCPs) in cancer care. METHOD: In total, 27 semi-structured interviews (17 individual and 10 group interviews) were conducted within 24 primary care units, including 61 physicians representing the public and private sectors. Interviews were conducted during 2017 and 2018. Data were analysed using a thematic analysis approach. RESULTS: Eight themes, including both perceived opportunities and challenges with the SCPs, were identified in the analysis. Most PCPs valued the SCPs, citing that they expedited the referral system and decreased patient waiting time. However, the guidelines were not completely clear leaving PCPs to wonder what constituted an SCP referral, who should initiate the referral, and how PCPs should communicate and collaborate with specialists. CONCLUSION: SCPs were a welcomed organisational change by PCPs, where PCPs thought that the SCPs could help in providing better patient care to potential cancer patients. However, updated guidelines and clarifications within the SCPs are warranted to have increased services for both the patients and medical personnel.