Treatment developments and the unfolding of the quality of life discussion in childhood medulloblastoma: a review |
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Authors: | Thora Gudrunardottir Birgitta Lannering Marc Remke Michael D. Taylor Elizabeth M. Wells Robert F. Keating Roger J. Packer |
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Affiliation: | 1. Center for Neuroscience and Behavioral Medicine, Children’s National Medical Center, Washington, DC, USA 2. Department of Pediatrics, Children’s Cancer Center, University of Gothenburg, Gothenburg, Sweden 3. Department of Laboratory Medicine and Pathobiology, Hospital for Sick Children, Toronto, Canada 4. Department of Neurology and the Brain Tumor Institute, Children’s National Medical Center, Washington, DC, USA 5. Department of Neurosurgery, Children’s National Medical Center, Washington, DC, USA
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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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