title: Disability and health-related quality of life in long-term survivors of cancer in childhood in Brazil.
abstract: There is limited experience with patient-reported measurements of health status and health-related quality of life (HRQL) in survivors of cancer in childhood in low-income countries. The purposes of this study were to collect such measurements in Brazil, to test hypotheses about differences among diagnostic groups, and to compare results with those from other countries. Survivors were eligible if diagnosed with cancer in childhood, attending a long-term follow-up clinic, cancer free, literate, and at least 13 years of age. Health status measurements were collected using a Brazilian Portuguese Health Utilities Index questionnaire. Questionnaire responses were converted to scores for morbidity in individual health attributes and for overall HRQL. More than one-third of the 138 consecutive survivors who participated reported some cognitive disability or pain. Approximately one-quarter reported problems with vision, speech, or emotion. Mean HRQL was similar (P>0.05) among countries for survivors of acute lymphoblastic leukemia and Hodgkin disease. The results support the hypotheses that Brazilian survivors of cancer in childhood experience a wide range of disabilities and impaired HRQL, are similar to those in other countries, and should be assessed in long-term follow-up clinics.
authors.affiliation: Centro de Tratamento e Pesquisa, Hospital AC Camargo, São Paulo, Brazil.
authors.forename: Sandra
authors.initials: S
authors.lastname: Shimoda
authors.forename: John
authors.initials: J
authors.lastname: Horsman
authors.forename: William
authors.initials: W
authors.lastname: Furlong
authors.forename: Ronald
authors.initials: R
authors.lastname: Barr
authors.forename: Beatriz
authors.initials: B
authors.lastname: de Camargo
mesh_terms: D000293:Adolescent; D000328:Adult; D017668:Age of Onset; D001938:Brazil; D002648:Child; D002675:Child, Preschool; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006305:Health Status Indicators; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D011788:Quality of Life; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology* / Q000706:statistics & numerical data*