Comment on "Reflections on patient engagement by patient partners: How it can go wrong".

As patient-advocacy, public policy and clinical researchers with special knowledge on Responsible Research Innovation (RRI) governance and the public health and psychology underlying patient engagement, we read with interest the comment contribution by Richards et al., "Reflections on patient engagement by patient partners: How it can go wrong" (Richards et al. in Res Involv Engagem 9:41, 2023. https://doi.org/10.1186/s40900-023-00454-13 ). As a way to help meet the "take-away actions for readers" included by the authors at the end of the article, we would like to further stimulate discussion with relevant stakeholder communities about the need to rethink the use of "expert patient". Based on our experience, the lack of a governance model engaging patients who are representative of the target patient community, as opposed to expert patients, is at the root of the tokenistic approach, the "patient partner as a checkmark statement" and the "lack of recognizing the vulnerability of patient partners", which results in "patient engagement going wrong". According to our experience, the Responsible Research Innovation (RRI) MULTI-ACT model has the potential to help meet these challenges.

In their article, Richards et al. (Res Involv Engagem 9:41, 2023. https://doi.org/10.1186/s40900-023-00454-13 ) reflect on the practices of patient engagement in research, highlighting not only the value and opportunity of including people suffering from a disease as coinvestigators in the research process but also the risks and errors that must be avoided in such a process. Along this line of discussion­and based on our experience of research, teaching and patient advocacy­we further reflect on the nature of the concept of "expert patient" in this paper. In particular, we argue for the importance of guaranteeing the wide inclusion of all the different kinds of "experiential knowledge" that patients may bring into the research project, and we question the risk of a poorly representative approach if only guided to select patients with acquired knowledge and expertise about the scientific research process itself. Based on our experience, the Responsible Research Innovation (RRI) governance models have the potential to help meet these challenges.

A Systematic Review of Patient Engagement Experiences in Brain Disorders.

Background: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce. Aim: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation. Methods: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria. Results: In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices. Discussion: Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of "expert patients" in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.

Collective health research assessment: developing a tool to measure the impact of multistakeholder research initiatives.

BACKGROUND: The need to more collaboratively measure the impact of health research and to do so from multidimensional perspectives has been acknowledged. A scorecard was developed as part of the Collective Research Impact Framework (CRIF), to engage stakeholders in the assessment of the impacts of health research and innovations. The purpose of this study was to describe the developmental process of the MULTI-ACT Master Scorecard (MSC) and how it can be used as a workable tool for collectively assessing future responsible research and innovation measures. METHODS: An extensive review of the health research impact literature and of multistakeholder initiatives resulted in a database of 1556 impact indicators. The MSC was then cocreated by engaging key stakeholders and conducting semi-structured interviews of experts in the field. RESULTS: The MSC consists of five accountability dimensions: excellence, efficacy, economic, social and patient-reported outcomes. The tool contains 125 potential indicators, classified into 53 impact measurement aspects that are considered the most relevant topics for multistakeholder research and innovation initiatives when assessing their impact on the basis of their mission and their stakeholders' interests. The scorecard allows the strategic management of multistakeholder research initiatives to demonstrate their impact on people and society. The value of the tool is that it is comprehensive, customizable and easy to use. CONCLUSIONS: The MSC is an example of how the views of society can be taken into account when research impacts are assessed in a more sustainable and balanced way. The engagement of patients and other stakeholders is an integral part of the CRIF, facilitating collaborative decision-making in the design of policies and research agendas. In policy making, the collective approach allows the evaluation perspective to be extended to the needs of society and towards responsible research and innovation. Multidimensionality makes research and innovations more responsive to systemic challenges, and developing more equitable and sustainable health services.

Researching COVID-19 in progressive MS requires a globally coordinated, multi-disciplinary and multi-stakeholder approach-perspectives from the International Progressive MS Alliance.

Background: The COVID-19 pandemic has reinforced the importance of research for the health of our society and highlighted the need for stakeholders of the health research and care continuum to form a collaborative and interdependent ecosystem. Objective: With the world still reeling from waves of the COVID-19 pandemic and adapting to the vaccine rollout at widely different rates, the International Progressive MS Alliance (hereafter Alliance) organized a meeting (April 2021) to consider how the Covid-19 pandemic impacts the health and well-being of people with progressive Multiple Sclerosis (MS). Methods: We invited the Alliance stakeholders and experts to present what they have learned about SARS-CoV-2 infection and progressive MS and to define future scientific priorities. Results: The meeting highlighted three priorities for additional focus: (1) the impact of Disease Modifying Therapies (DMTs) on the risk of COVID-19 and on the efficacy of COVID-19 vaccines in people with progressive MS; (2) the long-term impact of COVID-19 and COVID-19 vaccines on the biology of progressive MS; and (3) the impact on well-being of people with progressive MS. Conclusion: This paper's calls to action could represent a path toward a shared research agenda. Multi-stakeholder and long-term investigations will be required to drive and evolve such an agenda.

The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative: Progresses and open questions.

On 12 September 2019, the global Patient Reported Outcome for Multiple Sclerosis (PROMS) Initiative was launched at the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The multi-stakeholder PROMS Initiative is jointly led by the European Charcot Foundation (ECF) and the Multiple Sclerosis International Federation (MSIF), with the Italian Multiple Sclerosis Society (AISM) acting as the lead agency for and on behalf of the global MSIF movement. The initiative has the ambitious mission to (i) maximize the impact of science with and of patient input on the life of people affected by MS, and (ii) to represent a unified view on Patient-Reported Outcomes for MS to people affected by MS, healthcare providers, regulatory agencies and Health Technologies Assessments agencies. Equipped with an innovative participatory governance of an international and interdisciplinary network of different stakeholders, PROMS has the potential to guide future breakthroughs in MS patient-focused research and care. In this paper we present the progresses of the global PROMS Initiative and discuss the open questions that we aim to address.

The MULTI-ACT model: the path forward for participatory and anticipatory governance in health research and care.

The COVID-19 pandemic has unmasked even more clearly the need for research and care to form a unique and interdependent ecosystem, a concept which has emerged in recent years. In fact, to address urgent and unexpected missions such as "fighting all together the COVID-19 pandemic", the importance of multi-stakeholder collaboration, mission-oriented governance and flexibility has been demonstrated with great efficacy. This calls for a policy integration strategy and implementation of responsible research and innovation principles in health, promoting an effective cooperation between science and society towards a shared mission. This article describes the MULTI-ACT framework and discusses how its innovative approach, encompassing governance criteria, patient engagement and multidisciplinary impact assessment, represents a holistic management model for structuring responsible research and innovation participatory governance in brain conditions research.

Charting a global research strategy for progressive MS-An international progressive MS Alliance proposal.

BACKGROUND: Progressive forms of multiple sclerosis (MS) affect more than 1 million individuals globally. Recent approvals of ocrelizumab for primary progressive MS and siponimod for active secondary progressive MS have opened the therapeutic door, though results from early trials of neuroprotective agents have been mixed. The recent introduction of the term 'active' secondary progressive MS into the therapeutic lexicon has introduced potential confusion to disease description and thereby clinical management. OBJECTIVE: This paper reviews recent progress, highlights continued knowledge and proposes, on behalf of the International Progressive MS Alliance, a global research strategy for progressive MS. METHODS: Literature searches of PubMed between 2015 and May, 2021 were conducted using the search terms "progressive multiple sclerosis", "primary progressive multiple sclerosis", "secondary progressive MS". Proposed strategies were developed through a series of in-person and virtual meetings of the International Progressive MS Alliance Scientific Steering Committee. RESULTS: Sustaining and accelerating progress will require greater understanding of underlying mechanisms, identification of potential therapeutic targets, biomarker discovery and validation, and conduct of clinical trials with improved trial design. Encouraging developments in symptomatic and rehabilitative interventions are starting to address ongoing challenges experienced by people with progressive MS. CONCLUSION: We need to manage these challenges and realise the opportunities in the context of a global research strategy, which will improve quality of life for people with progressive MS.

Predominant cognitive phenotypes in multiple sclerosis: Insights from patient-centered outcomes.

BACKGROUND: Since combining information from different domains could be useful to increase prediction accuracy over and above what can be achieved at the level of single category of markers, this study aimed to identify distinct and predominant subtypes, i.e., cognitive phenotypes, in people with multiple sclerosis (PwMS) considering both cognitive impairment and mood disorders. METHODS: A latent class analysis (LCA) was applied on data from 872 PwMS who were tested with Montreal Cognitive Assessment (MoCA), Symbol Digit Modalities Test (SDMT) and Hospital Anxiety and Depression Scale (HADS). Furthermore, the distribution of demographic (i.e., age, gender, years of education) and clinical characteristics (i.e., disease duration, disease course, disability level) was examined amongst the identified phenotypes. RESULTS: Based on model fit and parsimony criteria, LCA identified four cognitive phenotypes: 1) only memory difficulties (n = 247; 28.3%); 2) minor memory and language deficits with mood disorders (n = 185; 21.2%); 3) moderate memory, language and attention impairments (n = 164; 18.8%); 4) severe memory, language, attention, information processing and executive functions difficulties (n = 276; 31.7%). CONCLUSIONS: Since less is known about the progressive deterioration of cognition in PwMS, a taxonomy of distinct subtypes that consider information from different clustered domains (i.e., cognition and mood) represents both a challenge and opportunity for an advanced understanding of cognitive impairments and development of tailored cognitive treatments in MS.

Disease-Modifying Therapies and Coronavirus Disease 2019 Severity in Multiple Sclerosis.

OBJECTIVE: This study was undertaken to assess the impact of immunosuppressive and immunomodulatory therapies on the severity of coronavirus disease 2019 (COVID-19) in people with multiple sclerosis (PwMS). METHODS: We retrospectively collected data of PwMS with suspected or confirmed COVID-19. All the patients had complete follow-up to death or recovery. Severe COVID-19 was defined by a 3-level variable: mild disease not requiring hospitalization versus pneumonia or hospitalization versus intensive care unit (ICU) admission or death. We evaluated baseline characteristics and MS therapies associated with severe COVID-19 by multivariate and propensity score (PS)-weighted ordinal logistic models. Sensitivity analyses were run to confirm the results. RESULTS: Of 844 PwMS with suspected (n = 565) or confirmed (n = 279) COVID-19, 13 (1.54%) died; 11 of them were in a progressive MS phase, and 8 were without any therapy. Thirty-eight (4.5%) were admitted to an ICU; 99 (11.7%) had radiologically documented pneumonia; 96 (11.4%) were hospitalized. After adjusting for region, age, sex, progressive MS course, Expanded Disability Status Scale, disease duration, body mass index, comorbidities, and recent methylprednisolone use, therapy with an anti-CD20 agent (ocrelizumab or rituximab) was significantly associated (odds ratio [OR] = 2.37, 95% confidence interval [CI] = 1.18-4.74, p = 0.015) with increased risk of severe COVID-19. Recent use (<1 month) of methylprednisolone was also associated with a worse outcome (OR = 5.24, 95% CI = 2.20-12.53, p = 0.001). Results were confirmed by the PS-weighted analysis and by all the sensitivity analyses. INTERPRETATION: This study showed an acceptable level of safety of therapies with a broad array of mechanisms of action. However, some specific elements of risk emerged. These will need to be considered while the COVID-19 pandemic persists. ANN NEUROL 2021;89:780-789.

Impact of the COVID-19 pandemic on persons with multiple sclerosis: Early findings from a survey on disruptions in care and self-reported outcomes.

OBJECTIVE: To describe the disruptions in care experienced by persons with Multiple Sclerosis in Italy due to the COVID-19 pandemic and the self-reported impact on their health and wellbeing. METHODS: A cross-sectional online survey was completed by 2722 persons with Multiple Sclerosis, after Italy instituted a national lockdown in response to the pandemic. RESULTS: Persons with Multiple Sclerosis reported that the pandemic caused broad disruptions to usual health and social care services, which impacted on their health and wellbeing. Disruptions in care were consistently associated with negative self-reported impacts on the expected progression of the disease, on out-of-pocket expenditure and on carer's stress. Psychological consequences were associated with interruption to usual psychological support, and concerns about the safety of care delivered in person. CONCLUSIONS: The quality of life of persons with Multiple Sclerosis depends greatly on prompt access to a broad range of health and care services. Negative psychological impacts reported by persons with Multiple Sclerosis with less severe disabilities show that accessible integrated services are crucial for maintenance of their wellbeing. Most persons with Multiple Sclerosis with more severe disability experienced negative impacts on perceived health. Their carers compensating for lack of social input resulted in care overburden. As continuity of care is crucial for persons with Multiple Sclerosis, as well as for persons with chronic conditions in general, strategies must be in place to ensure it is included in future pandemic response plans.

Predictors of clinically significant anxiety in people with multiple sclerosis: A one-year follow-up study.

BACKGROUND: Mood disorders, such as depression and anxiety, are frequent in people with Multiple Sclerosis (PwMS). Although anxiety has a well-recognized negative influence on family, work and social life, it has received less attention than depression. Thus, it is still under debate which risk factors can predict anxiety, its evolution over time and the extent of its effect on disability progression. OBJECTIVE: The aim of this retrospective study was to identify potential demographic, clinical and self-reported predictors that contribute to clinically significant anxiety at one-year follow up, measured by the anxiety subscale of the Hospital Anxiety and Depression Scale (HADS). METHODS: Data was acquired from a cohort of 608 subjects with MS, and included domains potentially meaningful for clinically significant anxiety. Associations between each variable and clinically significant anxiety at one-year follow-up were assessed with univariate and multivariate logistic regression analyses. RESULTS: Lower educational level, relapsing-remitting disease course, presence of clinically significant anxiety at baseline, higher depression and fatigue perception were significant predictors for clinically significant anxiety at one-year follow up. CONCLUSION: Findings confirm the importance of identifying risk factors for clinically significant anxiety in predicting prognosis and planning early intervention.

Measuring outcomes that matter most to people with multiple sclerosis: the role of patient-reported outcomes.

PURPOSE OF REVIEW: Patient-reported outcome (PRO) represents a unique opportunity to measure the impact of health research, and care on outcomes that matter most to people with multiple sclerosis (PwMS). RECENT FINDINGS: How to incorporate PROs in MS clinical trials and, practice remains a matter of debate. The variety of measures available for use in MS has some benefits, but the lack of a set of standard measures has significant disadvantages. To help meeting the challenge, different PROs standard sets have been developed (PROMIS) for use across a broad range of chronic health conditions, and SymptoMScreen, specifically for MS. However, many of them were not co-created with PwMS and lacking understanding about what matters to patients. The newly proposed MS care unit model together with emerging initiatives such as iConquerMS and PROMOPROMS, are shaping new meaningful PROs. However, the uptake of PROMs in all settings can be effective only by a commonly held strategic agenda shared by all relevant stakeholders. SUMMARY: The newly born PRO Initiative for MS (PROMS) aims to develop a strategic agenda shared by all relevant stakeholders to help meeting the challenge of developing PRO measures that correspond to the needs of all stakeholders.

Brain activity pattern changes after adaptive working memory training in multiple sclerosis.

Cognitive impairment and related abnormal brain activity are common in people with multiple sclerosis (PwMS). Adaptive training based on working memory (WM) has been shown to ameliorate cognitive symptoms, although the effects at a neural level are unclear. The aim of this study was to expand the existing research on the effects of an adaptive WM rehabilitative intervention on brain functional activity in PwMS. A sample of eighteen PwMS performed an 8-week home-based cognitive rehabilitation treatment based on adaptive WM training. PwMS were assessed before and after treatment using a validated neuropsychological battery and undergoing an fMRI session while carrying out a cognitive task (i.e., Paced Visual Serial Addition Test - PVSAT). fMRI activations were compared to the activation pattern elicited by eighteen matched healthy subjects performing the same task. At baseline, we found abnormal brain activity during PVSAT in PwMS when compared to healthy subjects, with a pattern including several bilateral activation clusters. Following rehabilitation, PwMS improved cognitive performance, as evaluated by the neuropsychological battery, and showed a different activation map with clusters mainly located in the right cerebellum and in the left hemisphere. The only significant cluster in the right hemisphere was located in the inferior parietal lobule, and the BOLD signal extracted in this area significantly correlated with cognitive performance both before and after the treatment. We suggest that WM training can improve the cognitive performance and reduce the abnormal activation of PwMS by partially maintaining or even restoring brain cognitive function.

An "all-wheel drive" proposal to accelerate clinical research in common and rare neurological diseases.

The complex biology of neurological diseases calls for collaborative efforts that may increase the success rate of clinical research. Models have been proposed, but concrete actions remain insufficient. Based on recent considerations from basic science, from science of patient input and from an analysis of scientific resources in Italy, we here explain why our country may represent an appropriate environment for such actions. Furthermore, we sketch operational framework and business model to be applied in order to accelerate, in parallel, the development of therapies in common and rare diseases.

MRI quality control for the Italian Neuroimaging Network Initiative: moving towards big data in multiple sclerosis.

The Italian Neuroimaging Network Initiative (INNI) supports the creation of a repository, where MRI, clinical, and neuropsychological data from multiple sclerosis (MS) patients and healthy controls are collected from Italian Research Centers with internationally recognized expertise in MRI applied to MS. However, multicenter MRI data integration needs standardization and quality control (QC). This study aimed to implement quantitative measures for characterizing the standardization and quality of MRI collected within INNI. MRI scans of 423 MS patients, including 3D T1- and T2-weighted, were obtained from INNI repository (from Centers A, B, C, and D). QC measures were implemented to characterize: (1) head positioning relative to the magnet isocenter; (2) intensity inhomogeneity; (3) relative image contrast between brain tissues; and (4) image artefacts. Centers A and D showed the most accurate subject positioning within the MR scanner (median z-offsets = - 2.6 ± 1.7 cm and - 1.1 ± 2 cm). A low, but significantly different, intensity inhomogeneity on 3D T1-weighted MRI was found between all centers (p < 0.05), except for Centers A and C that showed comparable image bias fields. Center D showed the highest relative contrast between gray and normal appearing white matter (NAWM) on 3D T1-weighed MRI (0.63 ± 0.04), while Center B showed the highest relative contrast between NAWM and MS lesions on FLAIR (0.21 ± 0.06). Image artefacts were mainly due to brain movement (60%) and ghosting (35%). The implemented QC procedure ensured systematic data quality assessment within INNI, thus making available a huge amount of high-quality MRI to better investigate pathophysiological substrates and validate novel MRI biomarkers in MS.

Correction to: The Italian multiple sclerosis register.

Unfortunately in the original publication, the affiliation of the author Maria Pia Amato was incorrect. The author inadvertently missed out to include her second affiliation.

Self-assessment reliability in multiple sclerosis: the role of socio-demographic, clinical, and quality of life aspects.

INTRODUCTION: Several multiple sclerosis studies matching self- and physician assessment of disease course and disability show moderate and high agreement respectively. However, the role played by socio-demographic, clinical, and quality of life (QoL) factors was not much investigated. The study aims at exploring how self-/physician agreement could depend on these variables. MATERIALS AND METHODS: Participants were asked to report own disease course and disability according to preset categories. Kappa-value and confidence interval (CI) for disease course and two-way random interclass correlation coefficient (ICC) and CI for disability were calculated to evaluate self-/physician agreement. Χ2 was applied to examine whether other factors (gender, age, education, civil status, disease duration, fatigue, quality of life) had systematic effects. RESULTS: Data analysis on 203 participants indicated fair agreement (Kappa-value = 0.30; 95% CI 0.23-0.38) and no dependency on the categories of each variable for disease course. Satisfactory correlation was found for disability (ICC = 0.74; 95% IC 0.67-0.80), good agreement was found for almost all variable categories, and significant differences were observed for education (better agreement for higher levels), disease duration, fatigue and QoL (better agreement for worse conditions). DISCUSSION: Results seem to suggest that higher education and worse clinical and QoL conditions could engage the patient in developing more disease awareness and realistic self-perception and self-evaluation.

The Italian multiple sclerosis register.

The past decade has seen extraordinary increase in worldwide availability of and access to several large multiple sclerosis (MS) databases and registries. MS registries represent powerful tools to provide meaningful information on the burden, natural history, and long-term safety and effectiveness of treatments. Moreover, patients, physicians, industry, and policy makers have an active interest in real-world observational studies based on register data, as they have the potential to answer the questions that are most relevant to daily treatment decision-making. In 2014, the Italian MS Foundation, in collaboration with the Italian MS clinical centers, promoted and funded the creation of the Italian MS Register, a project in continuity with the existing Italian MS Database Network set up from 2001. Main objective of the Italian MS Register is to create an organized multicenter structure to collect data of all MS patients for better defining the disease epidemiology, improving quality of care, and promoting research projects in high-priority areas. The aim of this article is to present the current framework and network of the Italian MS register, including the methodology used to improve the quality of data collection and to facilitate the exchange of data and the collaboration among national and international groups.

The Multiple Sclerosis Care Unit.

Treatment of multiple sclerosis (MS) has become increasingly multifaceted and comprises not only a variety of disease-modifying drugs with different mechanism of action but also a wide range of symptomatic therapies. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm, and this calls for the establishment of multidisciplinary MS Care Units. The core of the MS Care Unit would, in addition to MS neurologists and nurses, typically comprise neuropsychologists, clinical psychologists, physiotherapists, occupational therapists and secretaries, and will work together with a group of different specialists on formalized diagnostic workup procedures, protocols for initiation and follow-up of disease-modifying therapies. It is obvious that the terms of performance of different MS Care Units will vary across regions and need to be balanced with clinical practice according to local conditions. Although the main objective for establishment of MS Care Units will be to offer the single MS patient seamless and correct management of the disease to increase patient satisfaction and quality of life, it may even be cost-effective for the society by maintaining the working ability and reducing the costs of home help and custodial care by keeping people with MS resourceful.

Older age, higher perceived disability and depressive symptoms predict the amount and severity of work-related difficulties in persons with multiple sclerosis.

Purpose: This cross-sectional study aims to identify the predictors of work-related difficulties in a sample of employed persons with multiple sclerosis as addressed with the Multiple Sclerosis Questionnaire for Job Difficulties. Materials and methods: Hierarchical linear regression analysis was conducted to identify predictors of work difficulties: predictors included demographic variables (age, formal education), disease duration and severity, perceived disability and psychological variables (cognitive dysfunction, depression and anxiety). The targets were the questionnaire's overall score and its six subscales. Results: A total of 177 participants (108 females, aged 21-63) were recruited. Age, perceived disability and depression were direct and significant predictors of the questionnaire total score, and the final model explained 43.7% of its variation. The models built on the questionnaire's subscales show that perceived disability and depression were direct and significant predictors of most of its subscales. Conclusions: Our results show that, among patients with multiple sclerosis, those who were older, with higher perceived disability and higher depression symptoms have more and more severe work-related difficulties. The Multiple Sclerosis Questionnaire for Job Difficulties can be fruitfully exploited to plan tailored actions to limit the likelihood of near-future job loss in persons of working age with multiple sclerosis. Implications for rehabilitation Difficulties with work are common among people with multiple sclerosis and are usually addressed in terms of unemployment or job loss. The Multiple Sclerosis Questionnaire for Job Difficulties is a disease-specific questionnaire developed to address the amount and severity of work-related difficulties. We found that work-related difficulties were associated to older age, higher perceived disability and depressive symptoms. Mental health issues and perceived disability should be consistently included in future research targeting work-related difficulties.