title: Prospective study of health-related quality of life for children with brain tumors treated with proton radiotherapy.
abstract: OBJECTIVE
  We describe the health-related quality of life (HRQoL) of a cohort of children with brain tumors treated with proton radiotherapy.
  
  
  METHODS
  We recruited 142 pediatric patients with brain tumors (age 2 to 18 years) and parents of such patients treated with proton radiation at Massachusetts General Hospital from 2004 to 2010. HRQoL was assessed using the PedsQL core, brain tumor, and cancer modules (range, 0 to 100). Assessments took place during radiation and annually thereafter. We examined correlations of HRQoL with disease, treatment, and cognitive and behavioral data.
  
  
  RESULTS
  Overall reports of HRQoL during treatment were 74.8 and 78.1 for child self-report (CSR) and 67.0 and 74.8 for parent proxy report (PPR) for the core and brain tumor modules, respectively. PPR demonstrated lower HRQoL scores than CSR, but the two were highly correlated. Higher HRQoL scores were significantly associated with Wechsler Full Scale Intelligence Quotient scores (administered via the age-appropriate version) and better scores on two behavioral measures. Disease type also correlated with PPR core total HRQoL score at the beginning of treatment: medulloblastoma or primitive neuroectodermal tumors, 57.8; germ cell tumors, 63.5; ependymoma or high-grade glioma, 69.8; low-grade glioma, 71.5; and other low-grade neoplasms, 78.0 (P = .001). Craniospinal irradiation and chemotherapy were negatively correlated with HRQoL.
  
  
  CONCLUSIONS
  This is the first study to our knowledge of HRQoL in a cohort of children with brain tumors treated with proton radiation. This prospective study demonstrates the effect of disease type and intensity of treatment on HRQoL. It further suggests that where CSR is not possible, PPR is appropriate in most circumstances.
authors.affiliation: Massachusetts General Hospital, Boston, MA 02114, USA. kkuhlthau@partners.org
authors.forename: Karen A
authors.initials: KA
authors.lastname: Kuhlthau
authors.forename: Margaret B
authors.initials: MB
authors.lastname: Pulsifer
authors.forename: Beow Y
authors.initials: BY
authors.lastname: Yeap
authors.forename: Dianali
authors.initials: D
authors.lastname: Rivera Morales
authors.forename: Jennifer
authors.initials: J
authors.lastname: Delahaye
authors.forename: Kristen S
authors.initials: KS
authors.lastname: Hill
authors.forename: David
authors.initials: D
authors.lastname: Ebb
authors.forename: Annah N
authors.initials: AN
authors.lastname: Abrams
authors.forename: Shannon M
authors.initials: SM
authors.lastname: Macdonald
authors.forename: Nancy J
authors.initials: NJ
authors.lastname: Tarbell
authors.forename: Torunn I
authors.initials: TI
authors.lastname: Yock
mesh_terms: D000293:Adolescent; D001932:Brain Neoplasms / Q000523:psychology* / Q000532:radiotherapy*; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D018450:Disease Progression; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D011446:Prospective Studies; D061766:Proton Therapy; D011788:Quality of Life; D011878:Radiotherapy / Q000379:methods*; D011522:Protons
chemical_list: D011522:Protons