The socioeconomic status of patients with ankylosing spondylitis and its association with the burden of the disease and permanent disability: a cross-sectional cluster analysis.

Background: Few studies have been conducted to investigate the socioeconomic profiles of patients with ankylosing spondylitis (AS) and their associations with disease severity and disability. Objectives: The objectives of this study were to identify clusters of patients with AS according to their socioeconomic characteristics and to evaluate the associations between these clusters and the severity of the disease and permanent disability. Design: This was a cross-sectional and multicentre study. Methods: Patients with AS from the REGISPONSER study were included in this analysis. A cluster analysis was conducted using information on sociodemographic (age, sex, race, marital status, education) and socioeconomic (employment, profession, housing conditions and social level) characteristics. Disease burden and permanent disability were compared between the different clusters using logistic regression adjusted for disease duration and disease activity. Results: A total of 866 patients with AS were included. Two clusters were identified according to socioeconomic characteristics: Cluster 1 (n = 476), with a predominantly low socioeconomic profile, and Cluster 2 (n = 390), with a predominantly high socioeconomic profile. After adjusting for disease duration, patients in Cluster 1 had a longer diagnosis delay, greater body mass index and greater structural damage than those in Cluster 2. Access to biologic disease-modifying anti-rheumatic drugs (bDMARDs) was similar for both groups. However, patients in Cluster 1 had a greater prevalence of permanent disability than those in Cluster 2 after adjusting for disease duration and disease activity (30.8% vs 13.2%, odds ratio 2.58 (95% confidence interval 1.76-3.83)). Conclusion: This study suggests that the socioeconomic status of patients with AS may have implications for disease severity and permanent disability, despite the similar use of bDMARDs.

A Mixed-Methods Process Evaluation of the Maastricht Work-Related Support Intervention for Healthcare Professionals in Clinical Care.

PURPOSE: To perform the process evaluation of an intervention that aims to facilitate clinical healthcare professionals (HCP) to provide Maastricht Work-Related Support (WRS) to working patients with a chronic disease. METHODS: A mixed-methods approach was applied to address reach, efficacy, adoption, implementation, and maintenance (RE-AIM framework) as well as context of the Maastricht WRS intervention. Qualitative data included interviews with HCPs (N = 10), patients at two time points (N = 10 and N = 9), and field notes. Quantitative data included screening logbooks of HCPs, patient screening forms, and a questionnaire for patients. Content analysis or computation of frequencies was applied where applicable. RESULTS: Twenty-eight HCPs participated in the intervention (reach). They had a low attitude toward providing Maastricht WRS themselves (adoption). During clinical consultations, they addressed work for 770 of 1,624 (47%) persons of working age. Only 57% (437/770) had paid work, of which 10% (44/437) acknowledged a current need for support. Discussing work during clinical consultations by HCPs was hindered by other medical priorities and patients not disclosing problems (implementation). Over time, Maastricht WRS was less consistently provided (maintenance). Patients reported a positive impact of the intervention, such as fitness for work (efficacy). Context (e.g., lack of urgency, priority, time, and management support) played a pivotal role in the implementation. CONCLUSION: This evaluation showed that HCPs had a positive attitude toward WRS in general, but their attitude toward provide Maastricht WRS themselves in daily clinical care was low. Recommendations include improving HCPs' attitude, addressing WRS as a key policy point, and facilitating time.

Supporting work participation for adults with hand and upper limb conditions: A survey of the British Association of hand therapists.

Introduction: Musculoskeletal disorders affect over a third of the UK adult population and are a common reason for sick leave from work. The aims of this study were to describe the reported provision of work participation support for adults with hand and upper limb conditions by UK hand therapists, and to identify potential training needs in this area. Methods: A previous survey of the Australian Hand Therapy Association was adapted for the UK. The electronic questionnaire was distributed to members of the British Association of Hand Therapists. Eligible individuals were UK-based occupational therapists or physiotherapists whose role included the assessment and/or treatment of patients ≥18 years with hand or upper limb issues. Results: There were 123 participants (17% response rate). The most frequently reported work participation interventions were discussing graded return to work and sign-posting patients to speak with their doctor. The Allied Health Professionals Health and Work Report and Fit Note were not regularly used, and respondents reported low levels of confidence in issuing these documents. Barriers to providing work recommendations included a perceived lack of time, skills, knowledge and training. Facilitators included the patient discussing work as a rehabilitation goal. Conclusion: Development opportunities for UK hand therapists include increasing patient awareness that they can ask for work-related advice and documentation, promoting existing health and work training, developing hand therapy-specific resources, and ensuring access to electronic Fit Notes. International opportunities include the continuation of this survey with a focus on generating exemplar work participation strategies to inform further research.

Vulnerability profiles of workers and the relation with burnout symptoms: results from the Netherlands working conditions survey.

INTRODUCTION: Unfavorable working conditions may place workers in a vulnerable position in the labour market, but studies on the clustering of these factors and their relation to burnout symptoms are lacking. This study aims to identify subgroups of workers in potentially vulnerable positions in the labour market and examine whether burnout symptoms differ across the established subgroups. METHODS: This study utilizes cross-sectional data from 2019 of the Netherlands Working Conditions Survey (n = 55,283). Working conditions included employment contracts, working hours, multiple jobs, tenure, physical strain, autonomy, and workload. Burnout symptoms were measured with five items on a 7-point Likert scale. Latent Class Analysis was used to identify vulnerability subgroups based on working conditions and educational level. Wilcoxon rank-sum tests were used to examine whether burnout symptoms differed between the identified subgroups. RESULTS: Three out of nine subgroups (i.e., classes 4, 6, and 7) presented combinations of multiple unfavourable working conditions. The vulnerability of class 4, characterized by low educational level, physically demanding work, low autonomy, and a high workload, was underscored by a significantly higher burnout symptom score (M = 2.91;SD = 0.97) compared to all other subgroups. Subgroups 3 (M = 2.69;SD = 1.43) and 8 (M = 2.41;SD = 1.41), without striking unfavourable conditions, had the second and third highest scores on burnout symptoms. CONCLUSIONS: Determining vulnerability in the labour market is not straightforward as not all profiles that presented clusters of unfavourable working conditions scored high on burnout symptoms, and vice versa. Future research should investigate whether findings are similar to other mental health outcomes.

Work participation and the COVID-19 pandemic: an observational study in people with inflammatory rheumatic diseases and population controls.

Objective: During the coronavirus disease 2019 (COVID-19) crisis, people with inflammatory rheumatic diseases (iRDs) might have been more vulnerable for adverse work outcomes (AWOs) and restrictions in work ability and work performance. Our objectives were to compare AWOs during the pandemic and current work ability between iRD patients and controls, understand which patients are most vulnerable for these outcomes and (3) explore the role of work characteristics on work performance while working remotely. Methods: Patients and population controls in a Dutch COVID-19 cohort study provided information in March 2022 on work participation in March 2020 (pre-pandemic, retrospective) and March 2022 (current). AWOs comprised withdrawal from paid work, working hours reduction or long-term sick leave. Multivariable logistic/linear regression analyses compared outcomes (AWOs/work ability) between groups (patients/controls) and within patients. Results: Of the pre-pandemic working participants, 227/977 (23%) patients and 79/430 (18%) controls experienced AWOs following pandemic onset. A minority of AWOs (15%) were attributed to COVID-19. Patients were more likely to experience any-cause AWOs (odds ratio range 1.63-3.34) but not COVID-related AWOs, with female patients and patients with comorbidities or physically demanding jobs being most vulnerable. Current work ability was lower in female patients compared with controls [ß = -0.66 (95% CI -0.92 to -0.40)]. In both groups, when working remotely, care for children and absence of colleagues had varying effects on work performance (positive 19% and 24%, negative 34% and 57%, respectively), while employer support and reduced commuting had mainly positive effects (83% and 86%, respectively). Conclusion: During the pandemic, people with iRDs remained at increased risk of AWOs. COVID-related AWOs, however, were infrequent.

Optimizing the Maastricht Work-Related Support intervention in clinical patient care: the value of integrating action research into intervention mapping.

BACKGROUND: Healthcare professionals (HCPs) are increasingly recommended to play an important role in supporting people with chronic disease in work participation. An intervention for HCPs to provide work-related support to their patients in clinical care was developed with intervention mapping (Maastricht Work-Related Support; Maastricht WRS). Action research proposes 'combining research and practice', which allows us to incorporate experiences of HCPs while implementing and to realize intervention's full potential. Therefore, the aim of this study is to explore, by integrating action research into an intervention mapping approach, how experiences of HCPs with early implementation can be used to optimize the Maastricht WRS in clinical care. METHODS: Semi-structured interviews were held with nine HCPs (response rate 82%), involved in care for people with inflammatory arthritis, knee problems or inflammatory bowel disease. Some of them were not yet trained in the Maastricht WRS while others had received the training and were providing the Maastricht WRS. RESULTS: All participants regarded WRS an important part of clinical care. Untrained HCPs indicated a lack of knowledge and skills in providing the Maastricht WRS, and a need for tools. Trained HCPs were satisfied with the training and tools, but stressed that practical limitations hindered providing the Maastricht WRS. Action research showed that the intervention meets the needs of HCPs, but need some optimizations: (1) organizing 'intervision' for HCPs, (2) inform and activate patients to discuss work with their HCP, (3) update initial tools and (4) including patients' work status in the electronic patient system. CONCLUSIONS: Action research integrated into intervention mapping proved to improve the Maastricht WRS intervention. By involving HCPs, the intervention could be optimized to provide to support people with chronic diseases in clinical care in healthy and sustainable work participation.

A roadmap for sustainable implementation of vocational rehabilitation for people with mental disorders and its outcomes: a qualitative evaluation.

BACKGROUND: People suffering from mental health disorders have lower work participation compared to people without mental challenges. To increase work participation within this group vocational rehabilitation interventions are often offered. Collaboration between the mental health care and social security sectors is needed to enable professionals to perform optimally when carrying out these interventions. Yet, regulatory and financial barriers often hinder sustainable implementation. To overcome these barriers an experimental roadmap for sustainable funding based on a shared savings strategy was piloted in four regions. The aim of the present qualitative study was to gain understanding of the uses of this roadmap and the factors that were important in the experiment's process. METHOD: The roadmap consisted of five steps based upon insights from shared savings strategies and implementation science knowledge, and was initiated by a national steering board. The roadmap aimed to make sustainable funding agreements (based on shared savings) for the implementation of a vocational rehabilitation intervention. In four regions, stakeholders from the mental health care and social security services sector followed the roadmap. We conducted interviews (n = 16) with involved participants and project leaders of the experiment and collected 54 sets of field notes and documents to evaluate the roadmap process. A thematic analysis was used to analyse the data. RESULTS: Regions perceived improved stakeholder collaboration around vocational rehabilitation after they were guided by the roadmap. Three regions made, or intended to make, agreements on collaboration and funding, yet not based on shared savings. Moreover, going through the roadmap took more time than anticipated. Stakeholder collaboration depended on factors like personal and organizational interests and collaboration conditions and values. Financial legislation and politics were regarded as barriers and personal motives were mentioned as a facilitator in this process. CONCLUSIONS: Our study showed that the roadmap supported stakeholders to establish a more sustainable collaboration, even though no sustainable financial agreements were made yet. Although participants acknowledged the function of financial insights and the need for financial resources, the driver for collaboration was found to be more on improving clients' perspectives than on solving unfair financial distribution issues. This suggests modifying the focus of the roadmap from financial benefits to improving clients' perspectives.

Psychiatric morbidity and work participation in patients with congenital ventricular septal defects: a case-controlled study.

BACKGROUND: The burden of psychiatric morbidity, level of education, and work participation are currently unknown in patients with congenital ventricular septal defects (VSD). METHODS AND RESULTS: In a Danish population-based cohort study using nationwide medical registries, the burden of psychiatric disorders, use of psychotropic agents, level of education, and work participation were examined in patients with isolated congenital VSD and controls from the general population matched by age and sex. Subjects with known chromosomal abnormalities were excluded. To compute estimates, Cox proportional regression model, Fine and Gray's competing risk regression, and Kaplan-Meier failure function were used. We included 8006 patients and 79 568 controls born before 2018. Median follow-up was 23 years. Compared with controls, patients with VSD displayed a hazard ratio (HR) of 1.24 [95% confidence interval (CI): 1.17-1.32] for any psychiatric disorder where the hazard for intellectual disabilities was most pronounced [HR of 3.66 (95% CI: 2.98-4.50)]. The use of psychotropic agents was higher in patients compared with controls [HR 1.14 (95% CI: 1.09-1.20)]. The work participation was lower in patients with VSD compared with controls (P < 0.001) and was lower in patients with VSD with a psychiatric disorder compared with those without (P < 0.001). The 40-year cumulative incidence of permanent social security benefits was 29% in patients with psychiatric disorders (vs. 21% in controls with psychiatric disorders) and 8% in patients without psychiatric disorders (vs. 4% in controls). CONCLUSION: Patients with isolated VSD suffer from a higher burden of psychiatric disorders and display lower work participation compared with matched controls from the general Danish population. It is important to consider longer-term impacts on mental health, education, and subsequent employment in patients with VSD, in addition to cardiovascular effects, as these factors severely affect quality of life and have direct socioeconomic implications on an individual and societal level.

Exploring return to work barriers through the lens of model of human occupation. The NOW WHAT project.

BACKGROUND: The challenges of returning to work after sickness absence demands a wide conceptual understanding of what hinders the employee's work participation. Thus, there is a need to know more about self-perceived barriers for Return to Work (RTW). AIM: This study aimed to investigate RTW barriers experienced by employees on long-term sick leave, through the lens of the Model of Human Occupation (MOHO). MATERIAL AND METHODS: The study was a large-scale qualitative interview study (n = 85) using semi-structured telephone interviews. Eligible participants had received sick leave benefits for between 6 months and 1.5 years. The data were analysed with quantitative and qualitative content analysis. A deductive approach using the MOHO concepts guided the analysis process. RESULTS: The study generated 941 coded meaning units describing barriers for RTW, of which we were able to code 895 within the framework of MOHO. In the person-specific concepts, performance capacity barriers were most often described (n = 303), followed by volitional barriers (n = 165) and barriers related to habituation (n = 66). Barriers related to the environmental components amounted to 361. Barriers in the occupational environment was dominant (n = 214). CONCLUSION: Experienced barriers related to both environmental components and person-specific concepts. SIGNIFICANCE: The habituational and volitional perspective on barriers can contribute to the identification and communication of performance capacity-related barriers not previously identified.

Intermethod agreement of self-reports compared to register data collection for return to work and sickness absence: a systematic review and meta-analysis.

OBJECTIVES: To determine the intermethod agreement of self-reported vs. register data of 'sickness absence' (SA) and 'return to work' (RTW) outcome measurements. STUDY DESIGN AND SETTING: We conducted a systematic review and a meta-analysis of studies reporting mean differences (MDs) and sensitivity and specificity for self-report vs. register data and an inductive analysis of the self-report question formulations. An information specialist searched Medline, Embase, PsycINFO for studies published from inception to November 2022. Screening and data extraction was done by two authors independently. RESULTS: Twenty-three studies were included of which eighteen with an overall high risk of bias. Self-reports had a pooled MD of 1.84 SA days (95% confidence interval [CI] 0.26-3.41, I2 98%, 18 studies, 38,716 participants) compared to registries which varied among studies from 204 more to 17 days less. The median average sick leave in studies in the self-report group was 8 days (interquartile range 4-23 days). Being absent from work measured with self-report had a sensitivity of 0.83 (0.76-0.88 95% CI) and a specificity of 0.92 (0.88-0.94 95% CI) compared to registry data. The high heterogeneity amongst the studies could not be explained by recall time, gender, register type, prospective or retrospective self-reports, health problem, SA at baseline or risk of bias. Studies lacked standard outcome reporting, had unclearly formulated questions in self-reports and there was little information on the registers' quality. CONCLUSION: Current self-reports may differ from register-based absence data but in an inconsistent way. Due to inconsistency and high risk of bias the evidence is judged to be of very low certainty. Further research is needed to develop clear standard questions which can be used for SA and RTW self-reports. Quality of registers needs to be better evaluated. Percentage positive and negative agreement, MDs and 2 × 2 tables should be reported for studies investigating agreement between SA and RTW outcome measures.

Associations between depressive symptoms and 5-year subsequent work nonparticipation due to long-term sickness absence, unemployment and early retirement in a cohort of 2,413 employees in Germany.

BACKGROUND: We examined the association of depressive symptoms with subsequent events - and duration thereof - of work nonparticipation (long-term sickness absence, unemployment and early retirement). METHODS: We employed a 5-year cohort from the Study on Mental Health at Work (S-MGA), based on a random sample of employees subject to social contributions aged 31-60 years in 2012 (N = 2413). Depressive symptoms were assessed at baseline through questionnaires, while work nonparticipation was recorded in follow-up interviews. Associations of depressive symptoms with subsequent events of work nonparticipation were examined in two-part models, with events analysed by logistic regressions and their duration by generalized linear models. RESULTS: Medium to severe depressive symptoms were associated with events of work nonparticipation (males Odds Ratio [OR] = 3.22; 95% CI = 1.90-5.45; females OR = 1.92; 95% CI = 1.29-2.87), especially with events of long-term sickness absence in both genders and events of unemployment in males. Mild depressive symptoms were also associated with events of work nonparticipation (males OR = 1.59; 95% CI = 1.19-2.11; females OR = 1.42; 95% CI = 1.10-1.84). Among those experiencing one or more events, the duration of total work nonparticipation was twice as high among males [Exp(ß) = 2.06; 95% CI = 1.53-2.78] and about one third higher [Exp(ß) = 1.38; 95% CI = 1.05-1.83] among females with medium to severe depressive symptoms. CONCLUSIONS: The present study focuses on both events and duration of work nonparticipation, which are both critical for examining societal consequences of depressive symptoms. It is key to regard also mild depressive symptoms as a possible risk factor and to include different types of work nonparticipation.

General practitioners' stay-at-work practices in patients with musculoskeletal disorders: using Intervention Mapping to develop a training program.

OBJECTIVES: To describe current stay-at-work practices among Danish general practitioners (GPs) in relation to patients with musculoskeletal disorders, to identify potential avenues for improvement, and to suggest a training program for the GPs. DESIGN AND SETTING: We followed the principles of Intervention Mapping. Data were collected by means of literature searches, focus group interviews with GPs, and interaction with stakeholder representatives from the Danish labour market. RESULTS: GPs' current stay-at-work practices were influenced by systemic, organisational, and legislative factors, and by personal determinants, including knowledge and skills relating to stay-at-work principles and musculoskeletal disorders, recognition of the patient's risk of long-term work disability, their role as a GP, and expectations of interactions with other stay-at-work stakeholders. GPs described themselves as important partners and responsible for the diagnostic and holistic assessments of the patient but placed themselves on the side line relying on the patient or workplace stakeholders to act. Their practices are influenced both by patients, employers, and by other stakeholders. We propose a training course for GPs that incorporate both concrete tools and behaviour change techniques. CONCLUSIONS: We have identified varied perspectives on the roles and responsibilities of GPs, as well as legislative and organisational barriers, and proposed a training program. Not all barriers identified can be addressed by a training course, and some questions are left unanswered, among others - who are best suited to help patients staying at work?

Musculoskeletal disorders are highly prevalent and one of the most common causes for visiting a GP.In many countries, GPs are important in facilitating that patients stay at work, when they are experiencing musculoskeletal pain and disability.In our research, GPs place themselves on the side line as coaches relying on the patient or workplace to act.Barriers such as role identity, systemic and organisational issues prevent GPs from being more involved in stay-at-work practices.GPs' with knowledge about stay-at-work practices may empower patients to better self-management.

Stakeholder views on work participation for workers with depression and intersectoral collaboration in depression care: a focus group study with a salutogenic perspective.

OBJECTIVE: To explore how stakeholders in depression care view intersectoral collaboration and work participation for workers with depression. DESIGN: Focus group study applying reflexive thematic analysis using a salutogenic perspective. SETTING AND SUBJECTS: We conducted seven focus group interviews in six different regions in Norway with 39 participants (28 women); three groups consisted of general practitioners (GPs), two of psychologists and psychiatrists and two of social welfare workers and employers (of which one group also included GPs). RESULTS: Stakeholders considered work participation salutary for most workers with depression, given the right conditions (e.g. manageable work accommodations and accepting and inclusive workplaces). They also highlighted work as an integral source of meaningfulness to many workers with depression. Early collaborative efforts and encouraging sick-listed workers to stay connected to the workplace were considered important to avoid long and passive sickness absences. Furthermore, stakeholders' views illuminated why intersectoral collaboration matters in depression care; individual stakeholders have limited information about a worker's situation, but through collaboration and shared insight, especially in in-person collaborative meetings, they (and the worker) can gain a shared understanding of the situation, thereby enabling more optimal support. Ensuring adequate information flow for optimal and timely follow-up of workers was also emphasized. CONCLUSIONS: Stakeholders highlighted the salutary properties of work participation for workers with depression under the right conditions. Intersectoral collaboration could support these conditions by sharing insight and knowledge, building a shared understanding of the worker's situation, assuring proper information flow, and ensuring early and timely follow-up of the worker.

Predictors for work participation of people with visual impairments: A systematic review and meta-analysis.

INTRODUCTION: The aim of this systematic review and meta-analysis was to assess factors associated with work participation in people with visual impairments and to explore how these factors may have changed over time. METHOD: A comprehensive search of PubMed, Embase.com, EBSCO/APA PsycInfo, EBSCO/CINAHL and EBSCO/ERIC from database inception to 1 April 2022 was performed. We included studies with cross-sectional design, case-control, case-series or cohort design, involving visually impaired working-age adults with at least moderate visual impairment, and evaluated the association between visual impairment and work participation. Studies involving participants with deaf-blindness or multiple disabilities were excluded. We assessed study quality (Newcastle-Ottawa Scale [NOS]), examined between-study heterogeneity and performed subgroup analyses. The study protocol was registered in PROSPERO, CRD42021241076. RESULTS: Of 13,585 records, 57 articles described 55 studies including 1,326,091 participants from mostly high-income countries. Sociodemographic factors associated with employment included higher education (odds ratio [OR] 3.34, 95% confidence interval [CI] 2.47 to 4.51, I2 0%), being male (OR 1.59, 95% CI 1.37 to 1.84, I2 95%), having a partner (OR 1.73, 95% CI 1.12 to 2.67, I2 34%), white ethnicity (OR 1.36, 95% CI 1.07 to 1.74, I2 0%) and having financial assistance (OR 0.38, 95% CI 0.26 to 0.55, I2 85%). Disease-related factors included worse visual impairment (OR 0.61, 95% CI 0.46 to 0.80, I2 98%) or having additional disabilities (OR 0.55, 95% CI 0.49 to 0.62, I2 16%). Intervention-related factors included mobility aid utilisation (OR 0.35, 95% CI 0.10 to 1.18, I2 94%). A potential moderating effect of time period and geographical region was observed for some factors. Study quality (NOS) was rated moderate to high. CONCLUSION: Several sociodemographic and disease related factors were associated with employment status. However, the results should be interpreted with caution because of overall high heterogeneity. Future research should focus on the role of workplace factors, technological adjustments and vocational rehabilitation services on work participation.

Tailored support for preparing employees with cancer to return to work: Recognition and gaining new insights in an open atmosphere.

BACKGROUND: A considerable number of cancer survivors face difficulties in returning to work (RTW). More insight is needed on how to support employees shortly after cancer treatment and help them make the transition back to work. OBJECTIVE: To gain an in-depth understanding of how and under what circumstances a Cancer & Work Support (CWS) program, which assists sick-listed employees with cancer in preparing their RTW, works. METHODS: A qualitative design was used, inspired by Grounded Theory and Realist Evaluation components. Semi-structured interviews were conducted with RTW professionals (N = 8) and employees with cancer (N = 14). Interview themes covered experiences with CWS, active elements, and impeding and facilitating factors. Interviews were transcribed and analyzed by multiple researchers for contextual factors, active mechanisms, and the outcomes experienced. RESULTS: Respondents experienced the support as human centered, identifying two characteristics: 'Involvement' ('how' the support was offered), and 'Approach' ('what' was offered). Four themes were perceived as important active elements: 1) open connection and communication, 2) recognition and attention, 3) guiding awareness and reflection, and 4) providing strategies for coping with the situation. Variation in the experiences and RTW outcomes, appeared to be related to the personal, medical and environmental context. CONCLUSION: Both professionals and employees really appreciated the CWS because it contributed to RTW after cancer. This research shows that not only 'what' RTW professionals do, but also 'how' they do it, is important for meaningful RTW support. A good relationship in an open and understanding atmosphere can contribute to the receptiveness (of employees) for cancer support.

Work participation in adults with rare genetic diseases - a scoping review.

BACKGROUND: Work participation is a crucial aspect of health outcome and an important part of life for most people with rare genetic diseases. Despite that work participation is a social determinant of health and seems necessary for understanding health behaviours and quality of life, it is an under-researched and under-recognized aspect in many rare diseases. The objectives of this study was to map and describe existing research on work participation, identify research gaps, and point to research agendas in a selection of rare genetic diseases. METHODS: A scoping review was performed by searching relevant literature in bibliographic databases and other sources. Studies addressing work participation in people with rare genetic diseases published in peer reviewed journals were assessed using EndNote and Rayyan. Data were mapped and extracted based on the research questions concerning the characteristics of the research. RESULTS: Of 19,867 search results, 571 articles were read in full text, and 141 satisfied the eligibility criteria covering 33 different rare genetic diseases; 7 were reviews and 134 primary research articles. In 21% of the articles the primary aim was to investigate work participation. The extent of studies varied between the different diseases. Two diseases had more than 20 articles, but most had only one or two articles. Cross-sectional quantitative studies were predominant, with few utilizing prospective or qualitative design. Nearly all articles (96%) reported information about work participation rate, and 45% also included information about factors associated with work participation and work disability. Due to differences in methodologies, cultures and respondents, comparison between and within diseases are difficult. Nevertheless, studies indicated that many people with different rare genetic diseases experience challenges related to work, closely associated to the symptoms of the disease. CONCLUSION: While studies indicate high prevalence of work disability in many patients with rare diseases, the research is scarce and fragmented. More research is warranted. Information about the unique challenges of living with different rare diseases is crucial for health and welfare systems to better facilitate work participation. In addition, the changing nature of work in the digital age, may also open up new possibilities for people with rare genetic diseases and should be explored.

Interventions for work participation of unemployed or work-disabled cancer survivors: a systematic review.

Background: Supporting unemployed or work-disabled cancer survivors in their work participation can have extensive individual and societal benefits. We aimed to identify and summarise interventions for work participation of unemployed or work-disabled cancer survivors.Methods: Five databases (Medline, Embase, PsycINFO, CINAHL and Cochrane Library) were systematically searched for quantitative studies on interventions aimed at enhancing work participation of unemployed or work-disabled cancer survivors. Work participation refers to participation in the workforce, fulfilling one's work role. Manual and automatic screening (with ASReview software) were performed on titles and abstracts, followed by manual full-text screening. Data were extracted regarding study, patient and intervention characteristics, and work participation outcomes. Risk of bias (RoB) was assessed using the Cochrane RoB2 and QUIPS tools.Results: We identified 10,771 articles, of which we included two randomised controlled trials (RCTs), of which one feasibility RCT, and three cohort studies. In total, 1862 cancer survivors were included, with predominantly breast cancer. Work participation was mainly measured as time to return to work (RTW) and RTW rate. Interventions included components of coaching (e.g., psychological or rehabilitation), training (e.g., building confidence and managing fatigue) and self-management. Two RCTs with unclear RoB did not show an effect of multicomponent interventions compared to care as usual. One cohort study found a significant effect of a psycho-educational intervention on RTW rates, with moderate RoB. The other two cohort studies, with moderate RoB, reported significant associations between components including job search and placement assistance, and work participation.Discussion: Only few interventions aimed at enhancing work participation of unemployed or work-disabled cancer survivors, have been evaluated. In two cohort studies, promising components for future multicomponent interventions were identified. However, findings suggest that more evidence is necessary on such multicomponent interventions, in which elements explicitly directed at work and including the workplace should be included.

Predictors of return to work for people on sick leave with depression, anxiety and stress: secondary analysis from a randomized controlled trial.

PURPOSE: Knowledge about predictors of return to work (RTW) in people on sick leave with common mental disorders (CMDs) may inform the development of effective vocational rehabilitation interventions for this target group. In this study, we investigated predictors of RTW at 6 and 12 months in people on sick leave with depression, anxiety disorders or stress-related disorders. METHODS: We have performed a secondary analysis, utilizing data from two RCTs that evaluated the efficacy of an integrated health care and vocational rehabilitation intervention. Data were obtained from mental health assessments, questionnaires and registers. Using Cox regression analysis, the relationship between baseline variables and RTW was analysed at 6 and 12 months after randomization within the group of CMD as a whole and within the subgroups of depression, anxiety and stress-related disorders. RESULTS: Symptom burden and employment status at baseline predicted RTW in the CMD group (n = 1245) and in the three diagnostic subgroups at both time points. RTW self-efficacy predicted RTW in the depression group but not in the anxiety or stress subgroups. CONCLUSION: Many predictors of RTW were similar over time and, to some extent, across the CMD subgroups. Findings highlight the need not only to take health-related and psychological factors into account when developing vocational rehabilitation interventions but also to consider workplace strategies and options for support.

Transition back to work after mild TBI: A qualitative study.

BACKGROUND: While many persons who sustain a mild traumatic brain injury (MTBI) can resume work shortly after their injury, some experience persisting symptoms leading to longer-term sickness absence. In-depth knowledge about how these persons experience the return to work (RTW) process is needed. AIMS: To explore how persons with MTBI experience the process of returning to ordinary competitive work after a prolonged period of sickness absence. MATERIAL AND METHODS: Semi-structured interviews were conducted with six persons (four women) approximately 12 months after sustaining an MTBI. Data were analysed using a stepwise-deductive inductive method. RESULTS: When starting work the participants experienced a crisis. They described the importance of making the actual decision to RTW. Being present at the workplace was significant. In the process of increased workload, they expressed having challenges related to time perception and capacity restrictions. The importance of being seen and valued was emphasised. When reintegrated into the workplace revaluing work tasks and priorities shaped the RTW process as well as a further professional career. CONCLUSIONS AND SIGNIFICANCE: The process of RTW contained the experience of unpredictability and incompatibility with own identity and performance. Working had an impact on social participation, self-worth, daily structure, as well as reconstructing occupational biography.

Work participation is unaffected in Belgian spondyloarthritis patients: data from the BelGian Inflammatory Arthritis and SpoNdylitis cohorT.

OBJECTIVES: This study aimed to (i) investigate actual work participation in Belgian spondyloarthritis (SpA) patients compared with the general population, and (ii) identify determinants of work-related outcomes. MATERIAL AND METHODS: Adult SpA patients from the Ghent University Hospital based Be-GIANT cohort (fulfilling ASAS classification criteria) were cross-sectionally questioned on their socio-economic status and completed a Work Productivity and Activity Impairment questionnaire (May 2018 to May 2019). Results were compared with national and regional data on the general population using indirect standardization. Associations between clinical and job characteristics and work-related outcomes were analysed with logistic regression (having a paid job) and negative binomial hurdle models (sick leave and presenteeism, i.e. restrictions while at work). RESULTS: A total of 215/262 (82%) patients of working age (<65 y/o) had a paid job, corresponding to an age- and sex-adjusted employment ratio of 1.00 (95% CI 0.88, 1.14). Patients worked 39.6h (10.5h)/week, and 49% (95% CI 42, 56%) reported sick leave in the previous year, similar to the general population (39.7h/week, 42%). In total, 56% reported presenteeism of median (IQR) 10% (0-20%). In multivariate analysis, functional impairment (BASFI) and health-related quality of life (HRQoL, EuroQoL-VAS) were associated with each work-related outcome, while contextual factors (education, physically demanding job) were positively associated with, respectively, having a paid job and presenteeism. Clinical characteristics showed no independent association with any of these outcomes. CONCLUSIONS: Evidence from this academic cohort study does not support a work participation gap between SpA patients and the general population, but confirms the role of physical function, overall HRQoL, and education or job type as risk factors for adverse work outcomes.