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Treatment developments and the unfolding of the quality of life discussion in childhood medulloblastoma: a review

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Abstract

Purpose

To describe how the quality of life (QOL) discussion in childhood medulloblastoma (MB) relates to treatment developments, survival and sequelae from 1920 to 2014.

Methods

Articles containing “childhood medulloblastoma” and “quality of life” were identified in PubMed. Those containing phrases pertaining to psychological, emotional, behavioral or social adjustment in the title, abstract or keywords were selected. Inclusion of relevant older publications was assured by cross-checking references.

Results

1920–1930s: suction, electro-surgery, kilovolt (KV) irradiation. Survival = months. Focus on operative mortality, symptoms and survival. 1940s: radiotherapy improved. 1950s: chemotherapy and intubation. Survival = years. Opinions oscillated between optimism/awareness of physical sequelae of radiotherapy. 1960s: magnified vision, ventriculo-peritoneal (VP) shunts, megavolt (MV) irradiation. Long-term survival shifted the attention towards neurological problems, disability and carcinogenesis of radiotherapy. 1970s: CT, microscope, bipolar coagulation, shunt filters, neuroanesthesia, chemotherapy trials and staging studies. Operative mortality decreased and many patients (re)entered school; emphasis on neuropsychological sequelae, IQ and academic performance. 1980s: magnetic resonance imaging (MRI), Cavitron ultrasonic aspiration (CUSA), laser surgery, hyper-fractionated radiotherapy (HFRT). Cerebellar mutism, psychological and social issues. 1990s: pediatric neurosurgery, proton beams, stem cell rescue. Reflections on QOL as such. 21st century: molecular genetics. Premature aging, patterns of decline, risk- and resilience factors.

Discussion

QOL is a critical outcome measure. Focus depends on survival and sequelae, determined after years of follow-up. Detailed measurements are limited by time, money and human resources, and self-reporting questionnaires represent a crude measure limited by subjectivity. Therapeutic improvements raise the question of QOL versus cure. QOL is a potential primary research endpoint; multicenter international studies are needed, as are web-based tools that work across cultures.

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Notes

  1. Overall survival rates were used for the 20th century while 5-year average risk survival rates were used for the 21st century, since overall survival rates were not available for that period.

Abbreviations

CNS:

Central nervous system

CT:

Computerized tomography

CUSA:

Cavitron ultrasonic aspiration

EEG:

Electro-encephalography

HFRT:

Hyper-fractionated radiotherapy

IQ:

Intelligence quotient

KV:

Kilovolt

MB:

Medulloblastoma

MRI:

Magnetic resonance imaging

MV:

Megavolt

QOL:

Quality of life

SHH:

Sonic hedgehog

TNM:

Tumor, nodes, metastasis

VP:

Ventriculo-peritoneal

WNT:

Winged

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Authors and Affiliations

  1. Center for Neuroscience and Behavioral Medicine, Children’s National Medical Center, Washington, DC, USA

    Thora Gudrunardottir & Roger J. Packer

  2. Department of Pediatrics, Children’s Cancer Center, University of Gothenburg, Gothenburg, Sweden

    Birgitta Lannering

  3. Department of Laboratory Medicine and Pathobiology, Hospital for Sick Children, Toronto, Canada

    Marc Remke & Michael D. Taylor

  4. Department of Neurology and the Brain Tumor Institute, Children’s National Medical Center, Washington, DC, USA

    Elizabeth M. Wells

  5. Department of Neurosurgery, Children’s National Medical Center, Washington, DC, USA

    Robert F. Keating

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  1. Thora Gudrunardottir
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  2. Birgitta Lannering
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  3. Marc Remke
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  4. Michael D. Taylor
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  7. Roger J. Packer
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Correspondence to Thora Gudrunardottir.

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Gudrunardottir, T., Lannering, B., Remke, M. et al. Treatment developments and the unfolding of the quality of life discussion in childhood medulloblastoma: a review. Childs Nerv Syst 30, 979–990 (2014). https://doi.org/10.1007/s00381-014-2388-5

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