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 (0.340.60) 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.

Osteopenia, physical activity and health-related quality of life in survivors of brain tumors treated in childhood.

BACKGROUND: Osteopenia has been reported in children surviving acute lymphoblastic leukemia and brain tumors, apparently as a consequence of therapy. It has been suggested that cranial irradiation may play a role in the development of this complication. In order to explore that possibility, we examined survivors of brain tumors treated with and without radiation in childhood to investigate associations between radiation, osteopenia, physical activity, health status and overall health-related quality of life (HRQL). PROCEDURE: Subjects were survivors of posterior fossa tumors (astrocytoma or medulloblastoma) or optic glioma, < 18 years of age at diagnosis and > 1 year off treatment. Measurements of growth velocity, body composition, bone densitometry, physical activity and HRQL were undertaken. RESULTS: Twenty-five (62.5%) of the 40 eligible patients participated in the study. Of the 25 patients, 12 (48%) received radiation therapy (R group) while 13 received no radiation (NR group). Growth hormone (GH) deficiency had been detected in three subjects, one had completed GH therapy while two were still on hormone replacement. The prevalence of osteopenia was 44% in the entire group, and 67% versus 27% in the R and NR groups. Florid osteoporosis was present in 20% of the entire group, more than 40% of the R group but none of the NR group. A significant correlation (P < 0.01) was observed between overall HRQL and Z scores of bone mineral density (BMD) of the lumbar spine. Pain and ambulation/mobility utility scores correlated significantly (P < 0.05) with BMD, while levels of physical activity correlated (P < 0.05) with overall HRQL utility scores. CONCLUSIONS: This pilot study demonstrates that in survivors of brain tumors treated in childhood, radiation therapy is associated with significant loss of bone mineral. Among these survivors, HRQL is less, pain is more severe and ambulation is more restricted in those with low BMD scores. The reduction in HRQL is reflected in diminished physical activity. A larger multi-center study is needed to confirm these results.