Objective-To elicit health-related quality of life (HRQL) values associated with oral clefting by age using a visual analogue scale, and to explore the appropriateness of using health professionals as evaluators.Methods-A representative group of health professionals working on craniofacial and/or cleft palate teams in the United States was sampled. Values (between 0 and 1) representing the HRQL associated with isolated and nonisolated oral clefting for infants, children, adolescents, and adults were obtained. The relationships between selected evaluator characteristics and values were also assessed.Results-Of 330 professionals surveyed, 133 (40%) completed and returned reliable evaluations. Overall, HRQL values were clustered toward the right tail of the scale, indicating modest decreases in HRQL. Most evaluators reported feeling confident in completing the evaluations. HRQL values seemed to vary by team type (cleft palate only versus cleft palate/craniofacial care) and geographic location, but no major differences were found overall for any selected evaluator characteristics.Conclusions-This study provides HRQL values for oral clefting based on preferences of health professionals that may be useful in evaluating the effectiveness and cost-effectiveness of prevention and treatment strategies, including those carried out in clinical trial studies. The clustered pattern of HRQL values suggests either a consensus among evaluators of a limited burden of oral clefting or an overall lack of understanding of the evaluation task.Keywords cleft lip; cleft palate; cost effectiveness; cost utility; health-related quality of life; health utilities; health values; oral clefting; quality-adjusted life years; visual analogue scaleHealth-related quality of life (HRQL) is the term used to describe the impact of health status on the quality of human life. Although the phrase is often applied to a variety of definitions Address correspondence to: Dr. Jeffrey C. Murray, Department of Pediatrics, College of Medicine, 2182 ML, University of Iowa, Iowa City, IA 52242-1181. E-mail jeff-murray@uiowa.edu.. This work was supported by NIH grants DE08559 and DE16215. Assessment of HRQL within this framework involves the identification of preferences or values that describe the undesirability of health conditions or states compared to reference states. The HRQL values would be quantified through scores that could be combined with duration of life (e.g., QALYs) and used in conducting economic and effectiveness evaluations of health care interventions, including cost-effectiveness and cost-utility analyses, to guide the allocation of health care resources to improve health outcomes overall (Eisenberg, 1989). Further, because evidence-based medicine and the role of randomized clinical trials become increasingly important in clinical practice, it is critical to have reliable metrics to assess outcomes.
NIH Public AccessThe HRQL scores used to adjust the duration of life for HRQL are usually specified on a continuum that ranges from low t...