Health professionals' assessment of health-related quality of life values for oral clefting by age using a visual analogue scale method

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 HROL. 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 HROL values suggests either a consensus among evaluators of a limited burden of oral clefting or an overall lack of understanding of the evaluation task.