RESUMEN
BACKGROUND: This is a report on the translation and cultural adaptation from English to Turkish languages of a standard HEALTH UTILITIES INDEX® (HUI®) questionnaire for interviewer-administration and proxy assessment of patients' health status, and its use for assessing 50 consecutive pediatric oncology patients during periods of and subsequent recovery from neutropenia. PROCEDURE: Preparation of the Turkish-language questionnaire was a collaborative effort by physician-researchers in Turkey, senior Health Utilities, Inc. staff with extensive experience in the development and translation of HUI questionnaires, and Turkish-born residents of Canada. Standard HUI questionnaires cover both HUI Mark 2 (HUI2) and HUI Mark 3 (HUI3). RESULTS: The mean improvement in overall health-related quality of life (HRQL) scores between neutropenic and non-neutropenic phases was clinically important according to both HUI2 and HUI3 instruments. Single-attribute utility scores showed clinically important size improvements between phases for HUI2 mobility, emotion, and HUI2 self-care. Significant reductions in disability rates between phases were also detected for pain (HUI2 and HUI3 rate decreases of 30%, P < 0.001) and HUI3 ambulation (rate decline of 14%, P = 0.020). CONCLUSIONS: The study results provide evidence that the Turkish-language questionnaire is acceptable, valid and useful for collecting parental assessments of health-status among young cancer patients in Turkey. Neutropenia was associated with important deficits in overall HRQL and disabilities in ambulation/mobility, emotion, self-care, and pain. Treatment plans should include strategies for addressing emotion and pain problems to improve the HRQL of neutropenic patients.