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.

Cost-utility of a multicomponent intervention for fibromyalgia versus usual care: a pragmatic randomised controlled trial.

OBJECTIVE: To perform an economic evaluation on a multicomponent intervention programme for patients with fibromyalgia syndrome compared with usual clinical practice in primary care. DESIGN: A cost-utility analysis was conducted alongside a pragmatic randomised controlled trial (ClinicalTrials.gov: https://clinicaltrials.gov/ct2/show/record/NCT04049006) from a societal perspective, a human capital approach, and a 1-year time horizon. PATIENTS: Patients diagnosed with fibromyalgia  syndrome from the public health system in south Catalonia, Spain. METHODS: Crude and adjusted incremental cost- utility ratios were estimated to compare the treatment strategies based on cost estimations (direct medical costs and productivity losses) and quality-adjusted life years. One-way and 2-way deterministic sensitivity analyses were performed. RESULTS: The final analysed sample comprised 297 individuals, 161 in the intervention group and 136 in the control group. A crude incremental cost-utility ratio of € 1,780.75 and an adjusted ratio of € 851.67 were obtained, indicating that the programme  significantly improved patients' quality of life with a cost-increasing outcome that fell below the cost-effectiveness threshold. The sensitivity analysis  confirmed these findings when  varying large cost components, and showed dominance when increasing session attendance. CONCLUSION: The proposed multicomponent intervention programme was cost-effective compared with usual care for fibromyalgia, which supports its addition to standard practice in the regional  primary care service.

Patients' Lived Experience in a Multicomponent Intervention for Fibromyalgia Syndrome in Primary Care: A Qualitative Interview Study.

Fibromyalgia syndrome (FMS) disrupts patients' biopsychosocial spheres. A multicomponent intervention (MCI) program, which combined health education, cognitive behavioral therapy, and physical activity, was conducted in South Catalonia's primary care centers with the aim of improving symptom self-management and quality of life. A qualitative interview study was carried out to understand patients' lived experiences during the intervention program. Sampled purposively, 10 patients were interviewed via phone calls and face-to-face. The encounters were audio-recorded, verbatim transcribed, and analyzed through thematic analysis. As a result, four themes emerged: legitimizing fibromyalgia through the MCI, the MCI as a socializing experience, learning how to live with FMS through the MCI, and room for improving the MCI. Participants agreed on the program being an insightful experience that promoted illness knowledge and acceptance and that improved their coping skills and symptom self-management. The inclusion of additional psychological guidance, expressive psychological group therapy, and providing relatives with information were proposed for enhancing the program. Our findings have contributed to gaining insight into the subjective impact of the MCI and identifying new therapeutic targets to tailor the program to patients' needs, which will hopefully increase its effectiveness and improve their quality of life.

Patients' appraisals about a multicomponent intervention for fibromyalgia syndrome in primary care: a focus group study.

PURPOSE: To assess fibromyalgia patients' experiences and appraisals about a multidisciplinary intervention programme, in Catalonia's primary care, regarding its format and contents, benefits, and health impact in the short and long term. METHOD: Qualitative interpretative research design through hermeneutic phenomenology perspective. Two focus groups discussions were conducted in February and July 2020. The purposive heterogeneous sample included 19 fibromyalgia patients who attended a multicomponent programme. In addition, thematic analysis on the verbatims was performed. RESULTS: Findings were organized into five main domains with an explanatory theme each. Overall, the informants valued the programme as a positive experience due to its holistic approach, health benefits, suffering relief, group effect, and fibromyalgia legitimacy promotion. Detected improvable aspects focused on extending the timeframe, including family members as beneficiaries, deepening the thematic contents, and getting regular access to this healthcare service. Furthermore, the intervention was considered feasible to be incorporated into usual clinical care. CONCLUSION: the programme fulfilled users' expectations about results and procedure and showed promise as a treatment strategy to reinforce the usual practice. Our findings suggest a broad perspective on fibromyalgia patients' suffering, which urges us to adjust the intervention programme to their real health needs.

Cost-utility analysis of a multicomponent intervention for fibromyalgia syndrome in primary care versus usual clinical practice: study protocol for an economic evaluation of a randomised control trial.

INTRODUCTION: Fibromyalgia syndrome (FMS) imposes a high cost on society. The significant economic burden from the use of healthcare and, especially, social resources is a spur to revising the usual clinical care (UCC) and to improving treatment strategies. FMS has a deleterious effect on the quality of life (QOL) and productivity, which considerably increase the indirect costs to society. This study reports an economic evaluation comparing the cost and health benefits in a multicomponent intervention programme and UCC of patients with FMS who attend primary healthcare centres of the Gerència Territorial Terres de L'Ebre region of Catalonia, Spain. This article is linked to the pre-results of a randomised control trial study on the implementation of this intervention programme (ClinicalTrials.gov: NCT04049006). METHOD AND ANALYSIS: A cost-utility analysis will be conducted from a societal perspective. Quality-adjusted life years will be calculated from the results of the SF-36 questionnaire, a QOL measurement instrument. Direct and indirect healthcare costs will be obtained from official prices and reports published by the Spanish Public Health Administration and the National Statistics Institute. The incremental cost-utility ratio will be estimated to compare the two healthcare practices. Deterministic sensitivity analysis will also be used to compare different cost scenarios, modifying the items with the highest weight in the cost composition. ETHICS AND DISSEMINATION: The Clinical Research Ethics Committee of the IDIAPJGol Institute approved this study on 25 April 2018 (code P18/068) in accordance with the Helsinki/Tokyo Declaration. Information will be provided orally and in writing to participants, and their informed consent will be required. Participant anonymity will be guaranteed. The dissemination strategy includes publications in scientific journals and presentations in local and national media and at academic conferences. Trial registration number: NCT04049006; Pre-results.

Assessing the benefits on quality of life of a multicomponent intervention for fibromyalgia syndrome in primary care: patients' and health professionals' appraisals: a qualitative study protocol.

INTRODUCTION: Fibromyalgia syndrome (FMS) is a complex condition still scarcely understood and with ambiguity when prescribing treatment. Both patients and healthcare providers can supply valuable information for the development of new treatment strategies. The qualitative narrative analysis of participant's accounts is potentially helpful to reveal new insights about their opinions, needs, and experiences and, consequently, to model healthcare interventions accurately. International treatment guidelines suggest a promising future for multicomponent intervention (MI) approaches for FMS. This study aims to assess the benefits of a MI for patients with FMS in the context of primary care (PC) in Terres de L'Ebre, Catalonia (Spain). Furthermore, it is intended to detect the overall perception of effectiveness and to understand patients' lived experience and its impact on the quality of life. METHOD AND ANALYSIS: Qualitative research from a socioconstructivism paradigm perspective and a Hermeneutic Phenomenological method. For data collection, four focus group discussions (FGDs) of 8-12 people (2 FGDs of patients and 2 of professionals) and 10-12 key informant interviews with the participants in the MI group will be carried out. All the information will be recorded and verbatim transcribed to perform an interpretive thematic analysis. ETHICS AND DISSEMINATION: This study protocol has been approved by the Clinical Research Ethics Committee from the IDIAPJGol Institute, on 25 April 2018 (code P18/068), according to the Declaration of Helsinki/Tokyo. All participants will receive oral/written information about the study, and they will be required to sign an informed consent sheet. Data anonymity will be guaranteed. Dissemination will be carried out through publications in scientific journals, presentations in academic meetings, workshops and through the local and national media. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT04049006; Pre-results.

Development and Validation of the EspaiJove.net Mental Health Literacy (EMHL) Test for Spanish Adolescents.

There is evidence of the effectiveness of implementing mental health literacy (MHL) programs. However, there are substantial limitations in the instruments available for measuring MHL. This study aimed to develop and validate the EspaiJove.net MHL test (EMHL) for Spanish adolescents by assessing its psychometric properties. The development of the EMHL test was conducted using item pool generation and a pilot study. A convenience sample of students aged 13-15 years (n = 355) participated in the validity study. Reliability was assessed for internal consistency and via test-retest. Convergent validity was evaluated by comparing the effect sizes among known groups with different levels of mental health knowledge, the correlation with mental health-related instruments, and the item discrimination index. A final version of a 35-item EMHL test was obtained with two parts: (i) a binary choice format (yes/no) for the identification of mental disorders; (ii) a multiple choice question with four possible answer options. Internal consistency was acceptable in the first part (Cronbach's alpha = 0.744; Guttman's lambda 2 = 0.773) and almost acceptable in the second part (Cronbach's alpha = 0.615; Guttman's lambda 2 = 0.643). The test-retest evaluation supported the stability of the test (first part, ICC = 0.578; second part, ICC = 0.422). No ceiling and floor effects were found. The EMHL test scores discriminated between known groups with different levels of mental health knowledge and it is associated with several-related constructs of MHL. Conclusions: The EMHL test is a relevant measure for assessing MHL in adolescents into Spanish context with acceptable validity and stability.

"EspaiJove.net"- a school-based intervention programme to promote mental health and eradicate stigma in the adolescent population: study protocol for a cluster randomised controlled trial.

BACKGROUND: One half of adults who develop any mental disorder do so during adolescence. Previous literature showed that Mental Health Literacy (MHL) interventions impact mental health knowledge, reduce the associated stigma, and promote help-seeking among the adolescent population. However, evidence for the effectiveness and cost-effectiveness of these programmes remains inconclusive. The aim of this paper is to present a study protocol that evaluates the effectiveness of the " EspaiJove.net " programme. " EspaiJove.net " consists of a universal MHL intervention designed to promote mental health knowledge, increase help-seeking, reduce the stigma associated with mental illness, and prevent mental disorders in Spanish school settings. METHODS: A school-based clustered randomised controlled trial (cRCT) design with 12 months of follow-up. SUBJECTS: At least 408 secondary school students who attend the 3rd year of E.S.O (Compulsory secondary education for 13- to 14-year- olds) will be recruited from 8 schools within Barcelona city, Catalonia (Spain). INTERVENTION: A dose-response intervention will be delivered with 4 arms: 1) Sensitivity Programme (SP) in Mental Health (1 h); 2) Mental Health Literacy (MHL) Programme (6 h); 3) MHL plus first-person Stigma Reduction (MHL + SR) (7 h); 4) Control group: waiting list. Primary outcomes: 1) MHL: EspaiJove.net MHL Test (EMHLT); 2) Stigma: Reported and Intended Behaviour Scale (RIBS) and Community Attitudes toward the Mentally Ill (CAMI). Others outcomes: 1) Acceptability of intervention; 2) Mental health symptoms and emotional well-being (SDQ); 3) States of Change Scale (SCS); 4) Bullying and Cyberbullying; 5) Quality of life (EQ-5D); 6) Help seeking and use of treatment; 7) Health benefits. DISCUSSION: Results would be informative for efforts to prevent mental disorders and promote mental wellbeing in secondary school students. TRIAL REGISTRATION: NCT03215654 (date registration July 12, 2017).