title: The economic burden of caregiving on families of children and adolescents with cancer: a population-based assessment.
abstract: BACKGROUND
  Childhood cancer represents a relevant economic burden on families. The preferred tool to investigate family expenditure is the retrospective questionnaire, which is subject to recall errors and selection bias. Therefore, in the present study the economic burden of caregiving on families of children and adolescents (0-19 years of age) with cancer was analysed using administrative data as an alternative to retrospective questionnaires.
  
  
  METHODS
  Incident cases of cancer diagnosed in children and adolescents in 2000-2005 (N = 917) were identified from the Piedmont Childhood Cancer Registry and linked to available administrative databases to identify episodes of care during the 3 years after diagnosis (N = 13,433). The opportunity cost of informal caregiving was estimated as the value of the time spent by one of the parents, and was assumed to be equal to the number of days during which the child received inpatient care, day-care or outpatient radiotherapy. Factors affecting the level of economic burden of caregiving on families were analysed in a multivariable model.
  
  
  RESULTS
  The economic burden of caregiving increased when care was supplied at the Regional Referral Centre, or when treatment complexity was high. Families with younger children had a higher level of economic burden of caregiving. Leukaemia required a higher family commitment than any other cancer considered.
  
  
  CONCLUSIONS
  Estimates of the economic burden of caregiving on families of children and adolescents with cancer derived from administrative data should be considered a minimum burden. The estimated effect of the covariates is informative for healthcare decision-makers in planning support programmes.
authors.affiliation: Cancer Epidemiology Unit, "Città della Salute e della Scienza" Hospital, Torino, Italy; Childhood Cancer Registry CPO-Piemonte, Torino, Italy.
authors.forename: Eva
authors.initials: E
authors.lastname: Pagano
authors.forename: Ileana
authors.initials: I
authors.lastname: Baldi
authors.forename: Maria Luisa
authors.initials: ML
authors.lastname: Mosso
authors.forename: Luca Cordero
authors.initials: LC
authors.lastname: di Montezemolo
authors.forename: Franca
authors.initials: F
authors.lastname: Fagioli
authors.forename: Guido
authors.initials: G
authors.lastname: Pastore
authors.forename: Franco
authors.initials: F
authors.lastname: Merletti
mesh_terms: D000041:Absenteeism; D000293:Adolescent; D000553:Ambulatory Care / Q000191:economics; D002173:Cancer Care Facilities / Q000191:economics; D017028:Caregivers / Q000191:economics*; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D017050:Episode of Care; D005190:Family; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data*; D006760:Hospitalization / Q000191:economics; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007558:Italy; D008297:Male; D018803:Models, Economic; D009369:Neoplasms / Q000191:economics* / Q000628:therapy; D012042:Registries; D013997:Time Factors; D014195:Travel / Q000191:economics; D014478:Unemployment; D055815:Young Adult
keywords: cancer; cost and cost analysis; family caregivers; paediatrics; patient care