title: Anxiety and worry when coping with cancer treatment: agreement between patient and proxy responses.
abstract: OBJECTIVE
  Assess agreement between proxy respondents (caregivers) and children/adolescents related to the impact of cancer on children's/adolescents' health-related quality of life, with respect to anxiety and worry issues.
  
  
  METHODS
  A cross-sectional study was conducted among 83 Brazilian children/adolescents, of both genders, diagnosed with cancer, aged 5-18 years and their proxy respondents. Anxiety and worry were assessed through items of the instrument Pediatric Quality of Life Inventory™ Cancer Module Scale. Participants were recruited from the pediatric hematology/oncology centers at two public hospitals. All individuals were receiving medical care. Descriptive statistics were performed as well as a weighted kappa coefficient, Spearman's correlation coefficient, Wilcoxon signed-rank test and Bland-Altman plots. The magnitude of the difference between the mean scores obtained from children/adolescents and that of their proxy respondents was evaluated through effect size.
  
  
  RESULTS
  The proxy respondents underestimated the feelings of worry among children (8-12 years) (p < 0.001; effect size 0.71) and overestimated adolescents' (13-18 years) treatment anxiety (p < 0.05; effect size 0.57). The comparison between the three age groups (5-7, 8-12, 13-18 years) showed a tendency for children/adolescents to report increasing feelings of worry as they got older. In the 'treatment anxiety' subscale, there was a tendency for proxy respondents to present higher mean scores, revealing that proxy respondents believed the children's/adolescents' treatment anxiety decreased as they aged.
  
  
  CONCLUSIONS
  Discrepancies between the reports of children/adolescents and their proxy respondents were observed. Children's/adolescents' reports should not be ignored nor replaced by proxy reports; both reports should be analyzed together.
authors.affiliation: Department of Pediatric Dentistry and Orthodontics, Faculty of Dentistry, Universidade Federal de Minas Gerais, Av. Antônio Carlos 6627, Belo Horizonte, MG, 31270-901, Brazil, anapaulahermont@gmail.com.
authors.forename: Ana Paula
authors.initials: AP
authors.lastname: Hermont
authors.forename: Ana Carolina
authors.initials: AC
authors.lastname: Scarpelli
authors.forename: Saul M
authors.initials: SM
authors.lastname: Paiva
authors.forename: Sheyla M
authors.initials: SM
authors.lastname: Auad
authors.forename: Isabela A
authors.initials: IA
authors.lastname: Pordeus
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000375:Aging; D001007:Anxiety / Q000523:psychology*; D001938:Brazil / Q000453:epidemiology; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D000068598:Data Accuracy; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy*; D010290:Parents; D011788:Quality of Life / Q000523:psychology*; D057566:Self Report