Pater Ronne, Garmendia Joana, Gallais Benjamin, Graham Christopher, Voet Nicoline
Klimmendaal, Rehabilitation Center, Arnhem, The Netherlands; Department of Rehabilitation, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Nijmegen, The Netherlands.
Department of Clinical and Health Psychology and Research Methodology; Psychology Faculty, University of the Basque Country (UPV/EHU), Donostia-San Sebastián, Gipuzkoa, Spain.
Neuromuscul Disord. 2023 Jul;33(7):562-569. doi: 10.1016/j.nmd.2023.03.012. Epub 2023 Mar 28.
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.
本次研讨会旨在制定心理干预建议，以支持患有缓慢进展性神经肌肉疾病（NMD）的患者。研讨会参与者包括临床医生、研究人员、NMD患者及其亲属。首先，与会者探讨了NMD带来的关键心理挑战以及NMD对人际关系和心理健康的影响。随后，介绍了几种改善NMD患者幸福感的心理方法。研究了认知行为疗法和接受与承诺疗法对改善成年NMD患者疲劳、生活质量和情绪的随机对照试验结果。接着，与会小组考虑了针对某些NMD中出现的认知障碍或神经发育差异调整治疗方法的途径，以及支持NMD儿童和青少年及其家庭成员的方法。基于随机对照试验、精心开展的观察性研究的证据，以及这些数据与NMD患者经验的一致性，与会小组建议心理干预应融入为NMD患者提供的常规临床护理中。
