Multiple Sclerosis (MS) is the most common neurological disorder among young adults (20-40 years), causing, next to physical symptoms, cognitive decline in up to 70% of the patients. These cognitive symptoms are highly debilitating and among the main reasons for unemployment and disconnection from society.
Currently, cognitive rehabilitation and work coaching is only indicated when symptoms are present. However, once symptoms are present, extensive and mostly irreversible brain damage will limit the effects of interventions, i.e. intervening when symptoms are present and the societal consequences are tangible is too late. This means that early intervention is key to prevent future problems and to enable patients to live their life as they see fit.
The aim of Don’t be late! is to induce a paradigm shift: from symptom management towards the prevention of symptoms. This requires 1) timely detection of subclinical cognitive deficits, 2) availability of preventative interventions and 3) collaboration between stakeholders to ensure implementation in clinical practice.
All steps are incorporated in Don’t be late! In work package (WP) 1 a digital tool for timely detection of cognitive deficits is introduced. In WP2 novel preventative approaches “strengthening the brain” (exercise, lifestyle advice and cognitive training) and “strengthening the mind” (coaching at work) are expected to improve quality of life and prevent future cognitive decline and unemployment (WP2). In WP3, stakeholders, including patients, will evaluate (and adjust) research outcomes to foster proper implementation.
Our goals fit perfectly with two game changers of the NWA route “Health care research, sickness prevention and treatment”: 1) introducing a new research paradigm that will enhance participation in society and 2) investing in sickness prevention by introducing two novel interventions. While extremely relevant to people with MS, Don’t be late! might also set the stage for other chronic diseases.
