title: Treatment developments and the unfolding of the quality of life discussion in childhood medulloblastoma: a review.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Center for Neuroscience and Behavioral Medicine, Children's National Medical Center, Washington, DC, USA, info@posteriorfossa.org.
authors.forename: Thora
authors.initials: T
authors.lastname: Gudrunardottir
authors.forename: Birgitta
authors.initials: B
authors.lastname: Lannering
authors.forename: Marc
authors.initials: M
authors.lastname: Remke
authors.forename: Michael D
authors.initials: MD
authors.lastname: Taylor
authors.forename: Elizabeth M
authors.initials: EM
authors.lastname: Wells
authors.forename: Robert F
authors.initials: RF
authors.lastname: Keating
authors.forename: Roger J
authors.initials: RJ
authors.lastname: Packer
mesh_terms: D001932:Brain Neoplasms / Q000150:complications / Q000523:psychology / Q000628:therapy; D016208:Databases, Factual / Q000706:statistics & numerical data; D002658:Developmental Disabilities / Q000523:psychology* / Q000628:therapy; D006801:Humans; D008527:Medulloblastoma / Q000150:complications / Q000523:psychology / Q000628:therapy; D011788:Quality of Life; D012189:Retrospective Studies