Do you mind LIStening? - unmet needs of locked-in patients.

• Applicant: Professorin Dr. Dorothée Lulé
• Subject Area: Clinical Neurology; Neurosurgery and Neuroradiology ; Public Health, Healthcare Research, Social and Occupational Medicine
• Term: since 2025
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 564242245

Background: Locked-in syndrome (LIS) is a severe clinical condition of vascular, traumatic or neurodegenerative origin with an average survival time of 6±4 years and an increasing incidence. People with LIS are fully conscious, but cannot move or speak. They can only communicate via Eye Tracking (ET) and/or Brain Machine Interfaces (BMI). Shifting priorities from physical health and work life to social contact proved to be an efficient adaptation strategy for amyotrophic lateral sclerosis (ALS) in LIS. The same applies to increasing goal-oriented communication and reducing stress. The aim of the study is to analyse the specific medical, social and psychological needs of individuals. In the consortium of neurologists and neuropsychologists specialising in motor neuron diseases, we aim to identify patients' priorities, identify barriers to social participation and address the unmet needs of people with LIS to improve their well-being. Methods: In the first phase of the study (WP1), we will design a non-directive interview based on previous study interviews (BMBF PaCeMed, JPND NEEDSinALS and WorkOnStrongMind). This interview will be adapted for a pilot group of patients who communicate via ET or BMI regarding the areas of life that may be affected by LIS. We would like to ask about priorities, changes in the course of the disease, obstacles to achieving certain goals and possible solutions. In the second step (WP2), based on the results, we will design an elaborated structured questionnaire covering a wide range of areas of personal, professional and environmental needs to be used in a broader population of LIS patients. Based on the results of WP1 and WP2, we will be able to identify and characterise the unmet needs of LIS patients and possible solutions for the general LIS population. Based on this, in a third step (WP3), we will design an online psychological intervention based on the concept of mindfulness, targeting the areas of life where support is needed, e.g. reducing stressors, strengthening individual resources, increasing social inclusion. In summary, we will produce an open-access guide to managing the needs of LIS patients for healthcare providers and carers. Expected outcomes: In a collaborative effort between the members of our consortium and patients suffering from this extremely disabling disorder, we will be able to identify interventions tailored to patients.

• DFG Programme: Research Grants
• International Connection: Poland
• Cooperation Partner: Professorin Dr. Magdalena Kuzma-Kozakiewicz