Objective: This paper describes the development and validating of a QOL assessment specifically tailored to Taiwanese pediatric cancer patients (7-18 years) old and their parents/caregivers. Population, Sample, Setting, Years: Data were collected from eligible children with cancer and their parents in treatment at outpatient clinics and in the hospital ward of a Chang Gung Children Hospital, a large medical center in Taiwan Concept: Quality of life of children with cancer Design: In order to test the psychometric characteristics of the QOLCC, one descriptive cross sectional study to develop QOLCC was conducted in 106 children with cancer. To test the generalizability of the factor structure, an independent sample of children (n=24) with cancer were used. The assessment instrument was established based on a qualitative study, then refined using recognized item-analysis methods and preliminarily tested on a group of 25 patients. The final assessment instrument included three version of the same instrument, a patient self-report (QOLCC 7-12, for children aged 7-12years; QOLCC-ADO for adolescent aged 13-18 years) and a parent proxy-report (QOLCC-PAR). The validity of cross-referenced information between parent and child forms was subsequently examined using Pearson product correlation. The final 7-scale tool has a total of 34 items and was tested among 106 young cancer patients and their parents. Method: Psychometric properties of the measure were tested using item analysis, Cronbach alpha, and a confirmatory factor analysis. Findings: This QOLCC was developed with an explicit prior conceptual model based on grounded qualitative study findings. The QOLCC is a symptom or problem-based questionnaire with the conceptual framework that health-related problems can be solved from both a biomedical perspective (e.g., changing the patient medical treatment can enhance the QOL) and from a biobehavioral perspective (e.g., problem-solving on a daily basis). Although the use of the parent proxy in evaluating the QOL for children still does not reach a consistent conclusion, it is evident that parents are still a primary source for health care professionals identifying treatment outcomes for their pediatric oncology patients. The medium to high concordance of the patient/parent proxy is evidence that information can be obtained from parents when children are unable and/or unwilling to complete the assessment. Conclusion and Implication: This QOLCC, which can be administered in 15 minutes, is the first documented measure of the QOL administered directly to Taiwanese children. It demonstrates acceptable psychometric properties. Application of the QOLCC to Taiwanese children with cancer produced encouraging results, validation from a larger independent parent population is still necessary. Work is under way to collect longitudinal data in which prediction validity of QOLCC would be assessed.
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