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Health-related quality of life (HRQOL) is a critical diabetes outcome, yet differences between youth and parent-proxy ratings can make interpretation difficult. This study aims to explore potential differences between self- and parent-reports of Pediatric Quality of Life Inventory (PedsQL) scores from youth with type 1 (T1D) or type 2 diabetes (T2D) and to evaluate associations between discrepancies, PedsQL scores, and glycemic control (HbA1c). Youth and parents in the SEARCH for Diabetes in Youth Study (T1D: age 5–18, n = 3402; T2D: age 8–18, n = 353) completed the PedsQL Generic and Diabetes Modules, and youth provided a blood sample to assess HbA1c. Discrepancies (youth minus parent PedsQL ratings) were calculated and examined by age and diabetes type, and associations with youth PedsQL scores and HbA1c were evaluated. Discrepancies existed between youth and parent-proxy reports of generic and diabetes PedsQL scores in T1D and T2D (all p values

Over the past 20 years, there has been a growing interest in the inclusion of health-related quality of life (HRQL) measures to assess the effects of a condition and/or its therapies on a person's health. In response to this interest, methods to assess health status and HRQL have proliferated. There are now a number of valid and reliable instruments available for use in research investigations, which are the culmination of years of research with various populations, and reflect the target populations' perceptions of their health status and HRQL. In this article, we provide a definition of HRQL and its dimensions; describe types of HRQL instruments; discuss variations in how HRQL measures are scored and how these methods influence the interpretation of results; briefly describe utility measures; and summarize by discussing basic issues in the selection of HRQL instruments for research investigations.

The purposes of this study were 2-fold: to evaluate the impact of the schedule dependency of etoposide (3-day IV short course vs. a 21-day oral prolonged course) with cisplatin on the quality of life of small-cell lung cancer (SCLC) patients; and to examine the effect of baseline quality of life variables on long-term survival, after adjustment for known demographic and clinical prognostic factors. Participants were 70 patients enrolled in the cancer and leukemia group B (CALGB) protocol 9033. Quality of life was assessed at baseline, 6 and 12 weeks by: the EORTC QLQ-30, the Centers for epidemiology studies--Depression short form, the medical outcomes study (MOS) social support questionnaire, and a scale of sleep quality. Contrary to expectations, study results suggested no significant differences in the patients' life quality and treatment response based on whether they received etoposide in a 3-day IV vs. a 21-day oral regimen. The use of the baseline variables in predicting overall survival indicated that patients who were non-white and with liver involvement had decreased survival. Brain involvement, being male, and higher depressive symptoms were also found to be borderline significant in predicting decreased survival in this patient population.

The reliable and valid assessment of health-related quality of life (HRQoL) in human immunodeficiency virus (HIV) clinical research presents both familiar and unique challenges. Consistent with HRQoL research in general, measures of HRQoL in HIV disease must meet a set of standard psychometric properties, produce interpretable results, and be responsive to relatively small treatment effects. Furthermore, as clinical research for a range of diseases and conditions becomes increasingly global, HRQoL investigators are confronted with the formidable task of developing measures that are applicable across a range of cultures and languages within and across national boundaries. In this paper, we present a model of HRQoL to be applied across diseases and conditions, with a discussion of the key measurement issues. We then briefly consider the natural history and treatment aspects of HIV that are relevant to HRQoL research. In the final sections of the paper, we describe the elements needed in an 'ideal' HRQoL/HIV instrument and propose a method for evaluating the degree to which current HRQoL measures address the challenges posed by HIV clinical research.