Abstract
Introduction: With over 12,000 Multiple Sclerosis (MS) patients in Belgium, the decline in workforce participation from 60-90% at diagnosis to 30% after ten years is a pressing concern. High unemployment rates are influenced by the complex interplay of health status, work environment, job requirements, and personal factors. Stable, long-term employment positively impacts MS patients' well-being, disease management, and overall quality of life. In contrast, job loss or an uncertain professional future adversely affects health. This highlights the need for targeted interventions. Therefore, in the first place, we aim to investigate the opportunities and bottlenecks on the work floor for persons with MS in Flanders. In the second place, based on these results, we want to develop a MS Toolkit with several aids for persons with MS and their network to help them gain a sustainable employment.
Methods: Our intervention involved a multifaceted approach. Through questionnaires, reflection diaries, and in-depth interviews, we gathered insights from persons with MS, employers, and experts to identify the key challenges. This information was used as input for a co-creation session, where the idea of the MS Toolkit rose, comprising a screening tool and a dashboard. The screening tool should assess the balance between individual characteristics and workplace demands, while the dashboard should act as a user-friendly support platform linking identified work problems to appropriate solutions.
Results: Data collection involved 118 persons with MS, 19 employers, 24 diary participants, and 23 experts. Multiple challenges were identified, including difficulty in seeking timely help, lack of knowledge about available support, and limited expertise among healthcare professionals. The MS Toolkit, comprising a screening tool and dashboard, aims to solve these challenges. The screening tool became a combination of 2 validated workability questionnaires (Vragenlijst over Werkbaarheid and Vragenlijst Arbeidsreintegratie). The choice of these 2 tests, was decided by a small group of test persons (n=14). For the development of the dashboard, a 2-step approach was used: First, 36 persons with MS and 13 experts finished a questionnaire about all possible work problems. This was followed by 19 in-depth interviews with multiple experts to find out what the most appropriate service was for each work problem in Flanders. This became the blueprint of the dashboard (www.werkenmetms.be). The screening tool and dashboard were developed as online tools. Both tools are stepwise prototyped in a group of persons with MS with attention to lay-out, guiding texts, figures, fonts, size, user friendliness, etc.
Discussion: The MS Toolkit, a novel and collaborative approach to support working persons with MS, addresses the intricate challenges they face. While not a cure, stable employment significantly contributes to better disease management and quality of life. This toolkit serves as an indirect and non-invasive assistance, trying to impact the unemployment rates. Next steps are taken to enhance its usability and facilitate widespread adoption in the healthcare sector and MS-related services in order to reach as many as possible working persons with MS.