Don't be late! Timely identification of cognitive impairment in people with multiple sclerosis: a study protocol.

BACKGROUND: Cognitive impairment occurs in up to 65% of people with multiple sclerosis (PwMS), negatively affecting daily functioning and health-related quality of life. In general, neuropsychological testing is not part of standard MS-care due to insufficient time and trained personnel. Consequently, a baseline assessment of cognitive functioning is often lacking, hampering early identification of cognitive decline and change within a person over time. To assess cognitive functioning in PwMS in a time-efficient manner, a BICAMS-based self-explanatory digital screening tool called the Multiple Screener©, has recently been developed. The aim of the current study is to validate the Multiple Screener© in a representative sample of PwMS in the Netherlands. Additionally, we aim to investigate how cognitive functioning is related to psychological factors, and both work and societal participation. METHODS: In this cross-sectional multicentre study, 750 PwMS (aged 18-67 years) are included. To obtain a representative sample, PwMS are recruited via 12 hospitals across the Netherlands. They undergo assessment with the Minimal Assessment of Cognitive Functioning in MS (MACFIMS; reference-standard) and the Multiple Screener©. Sensitivity, specificity, and predictive values for identifying (mild) cognitive impairment are determined in a subset of 300 participants. In a second step, the identified cut-off values are tested in an independent subset of at least 150 PwMS. Moreover, test-retest reliability for the Multiple Screener© is determined in 30 PwMS. Information on psychological and work-related factors is assessed with questionnaires. DISCUSSION: Validating the Multiple Screener© in PwMS and investigating cognition and its determinants will further facilitate early identification and adequate monitoring of cognitive decline in PwMS.

Don't be late! Postponing cognitive decline and preventing early unemployment in people with multiple sclerosis: a study protocol.

BACKGROUND: Up to 65% of people with multiple sclerosis (PwMS) develop cognitive deficits, which hampers their ability to work, participating in day-to-day life and ultimately reducing quality of life (QoL). Early cognitive symptoms are often less tangible to PwMS and their direct environment and are noticed only when symptoms and work functioning problems become more advanced, i.e., when (brain) damage is already advanced. Treatment of symptoms at a late stage can lead to cognitive impairment and unemployment, highlighting the need for preventative interventions in PwMS. AIMS: This study aims to evaluate the (cost-) effectiveness of two innovative preventative interventions, aimed at postponing cognitive decline and work functioning problems, compared to enhanced usual care in improving health-related QoL (HRQoL). METHODS: Randomised controlled trial including 270 PwMS with mild cognitive impairment, who have paid employment ≥ 12 h per week and are able to participate in physical exercise (Expanded Disability Status Scale < 6.0). Participants are randomised across three study arms: 1) 'strengthening the brain' - a lifestyle intervention combining personal fitness, mental coaching, dietary advice, and cognitive training; 2) 'strengthening the mind' - a work-focused intervention combining the capability approach and the participatory approach in one-on-one coaching by trained work coaches who have MS themselves; 3) Control group-receiving general information about cognitive impairment in MS and receiving care as usual. Intervention duration is four months, with short-term and long-term follow-up measurements at 10 and 16 months, respectively. The primary outcome measure of the Don't be late! intervention study will be HRQoL as measured with the 36-item Short Form. Secondary outcomes include cognition, work related outcomes, physical functioning, structural and functional brain changes, psychological functioning, and societal costs. Semi-structured interviews and focus groups with stakeholders will be organised to qualitatively reflect on the process and outcome of the interventions. DISCUSSION: This study seeks to prevent (further) cognitive decline and job loss due to MS by introducing tailor-made interventions at an early stage of cognitive symptoms, thereby maintaining or improving HRQoL. Qualitative analyses will be performed to allow successful implementation into clinical practice. TRIAL REGISTRATION: Retrospectively registered at ClinicalTrials.gov with reference number NCT06068582 on 10 October 2023.

Toward a paradigm shift in healthcare: using the International Classification of Functioning, Disability and Health (ICF) and the capability approach (CA) jointly in theory and practice.

PURPOSE: Over the past two decades, healthcare systems have shifted to adopt a more holistic, patient-centered care system. However, operationalization in practice remains challenging. Two frameworks have contributed substantially to the transformation toward more holistic and patient-centered care: the International Classification of Functioning, Disability and Health (ICF) and the capability approach (CA). Using these frameworks jointly can contribute to improved patient-centered care in clinical practice. METHODS: This article explores the strengths and weaknesses of the use of the two frameworks in care and investigates whether using them jointly might contribute to more appropriate and patient-centered care. We will present a practical example of this integration in the form of a novel e-health application. RESULTS: The exploration indicated that if the frameworks are used jointly, the individual weaknesses can be overcome. The application, used to exemplify the joint use of the frameworks, contains all categories of the ICF. It offers a unique tool that allows a person to self-assess, record, and evaluate their functioning and capabilities and formulate related goals. CONCLUSIONS: Using the ICF jointly with the CA can foster holistic, patient-centered care. The e-health application provides a concrete example of how the frameworks can be used jointly. Implications for rehabilitationUsing the International Classification of Functioning, Disability and Health jointly with the capability approach can foster holistic, patient-centered care.The joint use of the frameworks is demonstrated by an e-health application which enables users to evaluate their functioning in relation to their own goals, provides them with the opportunity to increase control over their health and have a more active role in their care.Tools to record both functioning and goals from a patient's perspective can support professionals in offering patient-centered care in daily practice.Individual recording, monitoring and evaluation of functioning, capabilities and goals regarding functioning can provide a basis for research and quality improvement.

BigMove: A Group Intervention for People with Physical and Mental Health Conditions: Development, Theoretical Frameworks, Essential Elements and Design.

Introduction: This article describes an innovative, integrated care intervention, called BigMove, which aims to improve the functioning, capabilities and quality of life of people with a combination of physical and mental health conditions. Description: Theoretical frameworks reflected in the intervention are the Capability Approach (CA) and Self-Determination Theory (SDT). Essential elements of the intervention included to expand participants' behavioural repertoire are motivational interviewing; functional goal setting (using the International Classification of Functioning, Disability and Health (ICF); cognitive behavioural therapy; enjoyment; support of the group; and physical activity. The design combines individual sessions and group sessions. Discussion: By integrating the CA and the SDT, the intervention enables participants to make self-directed and value-driven choices in life and change their behaviour accordingly to strengthen their functioning and capabilities. To foster person-centred, integrated care, it is crucial to reform the interaction between professionals and patients and to re-structure the organisation and financing of care to enable the provision of complex integrated care interventions. Conclusion: For people with physical and mental health conditions, the intervention BigMove provides an innovative integrated care approach that addresses aspirations people have regarding their functioning and focuses on individual goal setting and behaviour change.

Automated recognition of functioning, activity and participation in COVID-19 from electronic patient records by natural language processing: a proof- of- concept.

PURPOSE: To address the feasibility, reliability and internal validity of natural language processing (NLP) for automated functional assessment of hospitalised COVID-19 patients in key International Classification of Functioning, Disability and Health (ICF) categories and levels from unstructured text in electronic health records (EHR) from a large teaching hospital. MATERIALS AND METHODS: Eight human annotators assigned four ICF categories to relevant sentences: Emotional functions, Exercise tolerance, Walking and Moving, Work and Employment and their ICF levels (Functional Ambulation Categories for Walking and Moving, metabolic equivalents for Exercise tolerance). A linguistic neural network-based model was trained on 80% of the annotated sentences; inter-annotator agreement (IAA, Cohen's kappa), a weighted score of precision and recall (F1) and RMSE for level detection were assessed for the remaining 20%. RESULTS: In total 4112 sentences of non-COVID-19 and 1061 of COVID-19 patients were annotated. Average IAA was 0.81; F1 scores were 0.7 for Walking and Moving and Emotional functions; RMSE for Walking and Moving (5- level scale) was 1.17 for COVID-19 patients. CONCLUSION: Using a limited amount of annotated EHR sentences, a proof-of-concept was obtained for automated functional assessment of COVID-19 patients in ICF categories and levels. This allows for instantaneous assessment of the functional consequences of new diseases like COVID-19 for large numbers of patients.Key messagesHospitalised Covid-19 survivors may persistently suffer from low physical and mental functioning and a reduction in overall quality of life requiring appropriate and personalised rehabilitation strategies.For this, assessment of functioning within multiple domains and categories of the International Classification of Function is required, which is cumbersome using structured data.We show a proof-of-concept using Natural Language Processing techniques to automatically derive the aforementioned information from free-text notes within the Electronic Health Record of a large academic teaching hospital.

Avoiding the Banality of Evil in Times of COVID-19: Thinking Differently with a Biopsychosocial Perspective for Future Health and Social Policies Development.

The COVID-19 pandemic provides the opportunity to re-think health policies and health systems approaches by the adoption of a biopsychosocial perspective, thus acting on environmental factors so as to increase facilitators and diminish barriers. Specifically, vulnerable people should not face discrimination because of their vulnerability in the allocation of care or life-sustaining treatments. Adoption of biopsychosocial model helps to identify key elements where to act to diminish effects of the pandemics. The pandemic showed us that barriers in health care organization affect mostly those that are vulnerable and can suffer discrimination not because of severity of diseases but just because of their vulnerability, be this age or disability and this can be avoided by biopsychosocial planning in health and social policies. It is possible to avoid the banality of evil, intended as lack of thinking on what we do when we do, by using the emergence of the emergency of COVID-19 as a Trojan horse to achieve some of the sustainable development goals such as universal health coverage and equity in access, thus acting on environmental factors is the key for global health improvement.

Reconsideration of the scheme of the international classification of functioning, disability and health: incentives from the Netherlands for a global debate.

PURPOSE: The ICF (International Classification of Functioning, Disability and Health) framework (used worldwide to describe 'functioning' and 'disability'), including the ICF scheme (visualization of functioning as result of interaction with health condition and contextual factors), needs reconsideration. The purpose of this article is to discuss alternative ICF schemes. METHOD: Reconsideration of ICF via literature review and discussions with 23 Dutch ICF experts. Twenty-six experts were invited to rank the three resulting alternative schemes. RESULTS: The literature review provided five themes: 1) societal developments; 2) health and research influences; 3) conceptualization of health; 4) models/frameworks of health and disability; and 5) ICF-criticism (e.g. position of 'health condition' at the top and role of 'contextual factors'). Experts concluded that the ICF scheme gives the impression that the medical perspective is dominant instead of the biopsychosocial perspective. Three alternative ICF schemes were ranked by 16 (62%) experts, resulting in one preferred scheme. CONCLUSIONS: There is a need for a new ICF scheme, better reflecting the ICF framework, for further (inter)national consideration. These Dutch schemes should be reviewed on a global scale, to develop a scheme that is more consistent with current and foreseen developments and changing ideas on health. Implications for Rehabilitation We propose policy makers on community, regional and (inter)national level to consider the use of the alternative schemes of the International Classification of Functioning, Disability and Health within their plans to promote functioning and health of their citizens and researchers and teachers to incorporate the alternative schemes into their research and education to emphasize the biopsychosocial paradigm. We propose to set up an international Delphi procedure involving citizens (including patients), experts in healthcare, occupational care, research, education and policy, and planning to get consensus on an alternative scheme of the International Classification of Functioning, Disability and Health. We recommend to discuss the alternatives for the present scheme of the International Classification of Functioning, Disability and Health in the present update and revision process within the World Health Organization as a part of the discussion on the future of the International Classification of Functioning, Disability and Health framework (including ontology, title and relation with the International Classification of Diseases). We recommend to revise the definition of personal factors and to draft a list of personal factors that can be used in policy making, clinical practice, research, and education and to put effort in the revision of the present list of environmental factors to make it more useful in, e.g., occupational health care.