267th ENMC International workshop: psychological interventions for improving quality of life in slowly progressive neuromuscular disorders

• DOI: 10.1016/j.nmd.2023.03.012
• Publication Date: 2023-03-28T17:35:56Z
• Authors: Ronne Pater; Joana Garmendia; Benjamin Gallais; Christopher Graham; Nicoline Voet; Nathalie Angeard; Hilde Braakman; Marnix van Bruggen; Cassiano Cesar de...; Tatiana de Carval...; Florence Chanteux; Grazia D'Angelo; Baziel van Engelen; Benjamin Gallais; Joana Garmendia Z...; Christopher Graham; Ingrid de Groot; Jos Hendriksen; Sylvia Klinkenberg; Madelon Kroneman; Garazi Labayru; Samar Muslemani; Maria Nobile; Luca Padua; Ronne Pater; Rosaline Quinlivan; Michael Rose; Carsten Schröter; Andone Sistiaga; Nicoline Voet; Stefan Winblad; Peter Young
• Keywords: Adult; Adolescent; Mental well-being; Psychological interventions; Acceptance and commitment therapy; Radboudumc 3: Disorders of movement DCMN: Donders Center for Medical Neuroscience; Psychosocial Intervention; 3. Good health; Cognitive behavioral therapy; Mental Health; All institutes and research themes of the Radboud University Medical Center; Quality of Life; Humans; Acceptance and Commitment Therapy; Child; Neuromuscular disorders

This workshop aimed to develop recommendations for psychological interventions to support people living with slowly progressive neuromuscular disorders (NMD). The workshop comprised clinicians, researchers, people living with NMD and their relatives. First, participants considered the key psychological challenges presented by NMD and the impact of NMD on relationships and mental health. Later, several psychological approaches for enhancing well-being in NMD were described. The results of randomised controlled trials of Cognitive Behaviour Therapy and Acceptance and Commitment Therapy for improving fatigue, quality of life, and mood in adults with NMD were examined. Then the group considered ways to adapt therapies for cognitive impairments or neurodevelopmental differences that occur in some NMD, alongside ways to support children and adolescents with NMD and their family members. Based on the evidence from randomised controlled trials, carefully conducted observational studies, and the coherence of these data with the experience of those living with NMD, the group recommends that psychological interventions should be embedded in the routine clinical care offered to people living with NMD.