title: Family, demographic and illness-related determinants of HRQL in children with brain tumours in the first year after diagnosis.
abstract: OBJECTIVE
  To evaluate the relationship between parent- and child-report Health-Related Quality of Life (HRQL) and demographic, tumour and family variables in children with a brain tumour in the first year after diagnosis and to identify determinants of HRQL at 12 months.
  
  
  METHODS
  Longitudinal prospective study: Semi-structured interviews took place approximately 1, 6 and 12 months after diagnosis. HRQL was measured using the self- and parent-report PedsQL 4.0 Total Scale Score. Tumour and treatment variables considered included tumour site and grade, hydrocephalus at diagnosis, chemotherapy and radiotherapy. Family variables included measures of family function, family support and family stress, the primary carer's coping strategies and symptoms of depression and anxiety. Univariate analyses were used at all three time points, and to identify potential early predictors of HRQL at 1 year. Regression analysis was then used to identify the most important determinants of HRQL at 1 year.
  
  
  RESULTS
  Thirty-five patients completed the 12-month interviews. There were consistent significant negative correlations between concurrent family impact of illness and parent and self-report HRQL, and positive correlations between concurrent family support and parent-report HRQL. Treatment with radio- or chemotherapy correlated with child-report HRQL only at some time points. Multivariate analysis showed infratentorial tumour site, and poor HRQL at 1 month best predicted poor self- and parent-report HRQL at 12 months.
  
  
  CONCLUSIONS
  Children with infratentorial tumours and poor HRQL early after diagnosis tend to have poor HRQL at 1 year. While family factors are important modulators of concurrent HRQL, they do not appear important in predicting HRQL.
authors.affiliation: Department of Paediatric Neurology, Frenchay Hospital, Bristol, UK. antpenn@doctors.org.uk
authors.forename: Anthony
authors.initials: A
authors.lastname: Penn
authors.forename: Stephen P
authors.initials: SP
authors.lastname: Lowis
authors.forename: Michael C G
authors.initials: MC
authors.lastname: Stevens
authors.forename: Linda P
authors.initials: LP
authors.lastname: Hunt
authors.forename: Robert I
authors.initials: RI
authors.lastname: Shortman
authors.forename: Renee J
authors.initials: RJ
authors.lastname: McCarter
authors.forename: Darwin
authors.initials: D
authors.lastname: Pauldhas
authors.forename: Andrew L
authors.initials: AL
authors.lastname: Curran
authors.forename: Peta M
authors.initials: PM
authors.lastname: Sharples
mesh_terms: D001932:Brain Neoplasms / Q000175:diagnosis / Q000523:psychology / Q000534:rehabilitation*; D002648:Child; D005190:Family; D005192:Family Health; D006801:Humans; D015192:Infratentorial Neoplasms; D008137:Longitudinal Studies; D015999:Multivariate Analysis; D010287:Parent-Child Relations; D011379:Prognosis; D011788:Quality of Life; D011795:Surveys and Questionnaires