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Rigshospitalet - a part of Copenhagen University Hospital
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Living with the cerebellar mutism syndrome: long-term challenges of the diagnosis

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  1. Past, present and future, the experience of time during examination for malignant brain tumor: a qualitative observational study

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  2. Surgical occlusion of middle meningeal artery in treatment of chronic subdural haematoma: anatomical and technical considerations

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  3. Long-term telemetric intracerebral pressure monitoring as a tool in intracranial hypotension

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  4. Changes in intracranial pressure and pulse wave amplitude during postural shifts

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  1. A qualitative study of adolescent cancer survivors perspectives on social support from healthy peers - A RESPECT study

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  2. Long-term telemetric intracerebral pressure monitoring as a tool in intracranial hypotension

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  3. TERT promoter mutations in primary and secondary WHO grade III meningioma

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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.

Original languageEnglish
JournalActa Neurochirurgica
Volume163
Issue number5
Pages (from-to)1291-1298
Number of pages8
ISSN0001-6268
DOIs
Publication statusPublished - May 2021

    Research areas

  • Neurological conditions, Paediatrics, Quality of life, Rehabilitation

ID: 61892131