Measurement of health-related quality of life in survivors of cancer in childhood in Central America: feasibility, reliability, and validity.

Cancer is the commonest cause of disease-related death in children over 5 years of age in various parts of Latin America, but the survival rates are improving. This study assessed the health status and health-related quality of life (HRQL) of more than 200 survivors of cancer in childhood in the countries of a Central American consortium devoted to pediatric hematology-oncology. Patients' self-reports and parental proxy assessments were collected using interviewer-administered Spanish-language questionnaires, and physicians provided assessments using self-complete questionnaires, based on the complementary Health Utilities Index (HUI) Mark 2 (HUI2) and Mark 3 (HUI3) health status classification systems. Inter-rater agreement, measured by intra-class correlation (ICC), was fair to moderate (0.34<ICC<0.55) between patients, parents, and physicians for HRQL scores. There was substantial or almost perfect agreement (ICC>0.60) for all 3 pairs of assessors for readily assessable attributes: HUI2 sensation, HUI3 vision, HUI3 hearing, and HUI3 ambulation. Less than 40% of the patients reported being in perfect health. More than 20% reported being in health states with HRQL scores corresponding to moderate or severe disability, notably in the attributes of emotion and cognition. The results reflect a common profile in survivors of cancer in childhood, including those from industrialized societies. This study illustrates the feasibility of collecting reliable and valid information on HRQL in the developing country context, raising the prospect that such information could be used to influence clinical practice.