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神经肌肉疾病患者的心理状况:病例系列

Psychological aspects in neuromuscular patients: case series.

作者信息

Manzo Raffaella, Annunziata Anna, Calabrese Cecilia, Marotta Antonella, Fiorentino Giuseppe

机构信息

Unit of Respiratory Pathophysiology, Monaldi-Cotugno Hospital, Naples, Italy.

Department of Translational Medical Sciences, University of Campania "Luigi Vanvitelli", Naples, Italy.

出版信息

Acta Myol. 2025 Jun;44(2):67-72. doi: 10.36185/2532-1900-1168.

Abstract

The management of patients with neuromuscular diseases requires a multidisciplinary approach that integrates medical care with targeted psychological support. Respiratory difficulties, often treated with non-invasive ventilation (NIV) are accompanied by mood disorders such as anxiety and depression, which can compromise treatment adherence and quality of life. In our Unit, we performed psychological assessment from the first visit, using the Beck Depression Inventory-II (BDI-II) scale to evaluate the patients, and initiate where necessary, psychological support, also via telemedicine. We present four representative clinical cases including Giovanni, with Bethlem myopathy who exhibited resistance to NIV linked to feelings of anger and frustration; Luisa, with Steinert's disease who experienced relational rejection that undermined her self-esteem; Maria, also with Steinert's disease who expressed anticipatory anxiety over the loss of autonomy; and Lorenzo, with Duchenne muscular dystrophy who faced social isolation and resistance to ventilation by finding confort in music. In all cases, psychological support led to reduced BDI scores and an improvement in treatment adherence. These results highlight the clinical efficacy of structured psychological integration within multidisciplinary teams. However, scientific literature still needs more controlled studies to confirm these results. We emphasize the importance of a holistic approach that equally takes into account the physical and psychological health of patients with neuromuscular diseases.

摘要

神经肌肉疾病患者的管理需要多学科方法,将医疗护理与有针对性的心理支持相结合。呼吸困难通常采用无创通气(NIV)治疗,同时伴有焦虑和抑郁等情绪障碍,这可能会影响治疗依从性和生活质量。在我们科室,从首次就诊开始就进行心理评估,使用贝克抑郁量表第二版(BDI-II)对患者进行评估,并在必要时通过远程医疗提供心理支持。我们展示了四个具有代表性的临床病例,包括患有贝思伦肌病的乔瓦尼,他对NIV治疗产生抵触情绪,与愤怒和沮丧情绪有关;患有斯坦纳特病的路易莎,她经历了人际关系上的排斥,这损害了她的自尊;同样患有斯坦纳特病的玛丽亚,她对失去自主性表现出预期性焦虑;以及患有杜氏肌营养不良症的洛伦佐,他面临社会隔离,通过在音乐中找到慰藉来抵抗通气治疗。在所有病例中,心理支持都导致BDI评分降低和治疗依从性提高。这些结果突出了多学科团队中结构化心理整合的临床疗效。然而,科学文献仍需要更多对照研究来证实这些结果。我们强调全面方法的重要性,该方法同样要考虑到神经肌肉疾病患者的身心健康。

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