Background

After posterior fossa tumour surgery, up to 39% of children experience postoperative cerebellar mutism syndrome (CMS) characterized by mutism and other motor and cognitive impairments. There is a lack of knowledge on the patient-reported challenges and long-term needs. Consequently, no specific recommendations exist for rehabilitative and supportive interventions for patients with CMS. The aims of this study were to explore the patients’ experiences related to the sequelae of CMS, to identify challenges and needs regarding support and rehabilitation in the period of growing from child to adult and to add perspectives for future developments of supportive care and rehabilitative guidelines.

Methods

Ten semi-structured interviews were conducted with young adults diagnosed with CMS as children. A thematic analysis identified four themes describing challenges impacting aspects of the participants’ lives.

Results

Four main themes were identified and highlight the rehabilitative need for focus on verbal and non-verbal communication skills in addition to the physical impairments. We found that brain tumour survivors with CMS can benefit from social and educational rehabilitation, straightforward and truthful information, support in structuring their everyday lives and increased public knowledge of CMS.

Conclusion

Children with CMS face a variety of challenges affecting many aspects of their everyday lives. They should be entitled to the elements of a current rehabilitation initiative for childhood cancer to support patients’ social disability and educational decline. Finally, we identified a need for an official information publication.

中文翻译：

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患有小脑syndrome默症候群：诊断的长期挑战。

背景

后颅窝肿瘤手术后，高达39％的儿童经历了以小脑ism行以及其他运动和认知障碍为特征的术后小脑行症候群（CMS）。缺乏关于患者报告的挑战和长期需求的知识。因此，没有针对CMS患者的康复和支持性干预措施的具体建议。这项研究的目的是探讨与CMS后遗症有关的患者经验，确定从儿童到成人成长期间在支持和康复方面的挑战和需求，并为支持治疗和康复指南的未来发展增加观点。

方法

对被诊断患有CMS的年轻儿童进行了十次半结构式访谈。主题分析确定了四个主题，描述了影响参与者生活各个方面的挑战。

结果

确定了四个主要主题，这些主题强调了除了身体上的障碍之外，还需要集中精力于口头和非语言沟通技巧的康复。我们发现患有CMS的脑肿瘤幸存者可以受益于社会和教育的康复，直接而真实的信息，在构建其日常生活中的支持以及对CMS的更多了解。

结论

患有CMS的儿童面临各种各样的挑战，影响到他们日常生活的许多方面。他们应有权获得目前针对儿童期癌症的康复计划的要素，以支持患者的社会残疾和教育程度下降。最后，我们确定需要官方信息出版物。