The Americleft Speech Project: A Training and Reliability Study.

OBJECTIVE: To describe the results of two reliability studies and to assess the effect of training on interrater reliability scores. DESIGN: The first study (1) examined interrater and intrarater reliability scores (weighted and unweighted kappas) and (2) compared interrater reliability scores before and after training on the use of the Cleft Audit Protocol for Speech-Augmented (CAPS-A) with British English-speaking children. The second study examined interrater and intrarater reliability on a modified version of the CAPS-A (CAPS-A Americleft Modification) with American and Canadian English-speaking children. Finally, comparisons were made between the interrater and intrarater reliability scores obtained for Study 1 and Study 2. PARTICIPANTS: The participants were speech-language pathologists from the Americleft Speech Project. RESULTS: In Study 1, interrater reliability scores improved for 6 of the 13 parameters following training on the CAPS-A protocol. Comparison of the reliability results for the two studies indicated lower scores for Study 2 compared with Study 1. However, this appeared to be an artifact of the kappa statistic that occurred due to insufficient variability in the reliability samples for Study 2. When percent agreement scores were also calculated, the ratings appeared similar across Study 1 and Study 2. CONCLUSION: The findings of this study suggested that improvements in interrater reliability could be obtained following a program of systematic training. However, improvements were not uniform across all parameters. Acceptable levels of reliability were achieved for those parameters most important for evaluation of velopharyngeal function.

Quality of life among children with velocardiofacial syndrome.

OBJECTIVE: To explore the health-related quality of life (QoL) among children with velocardiofacial syndrome (VCFS) and to compare QoL by gender and with samples of chronically ill and healthy children. DESIGN AND SETTING: Cross-sectional design, comparing data obtained from a survey of parents of children with VCFS to previously published data from comparison groups of children who are healthy or who have other chronic conditions. PARTICIPANTS: Parents of 45 children aged 2 to 18 years with VCFS participated in this study. Results were compared with published data on the same measures from samples of parents of healthy children (n = 10,343) and children with a variety of chronic conditions (n = 683). MAIN OUTCOME MEASURES: Quality of life, including fatigue, was measured using the PedsQL(TM) Measurement Model. Strengths were assessed by parent report from a list of character traits developed from the Values in Action Classification System. RESULTS: Quality of life was lower across all domains compared with healthy children. Boys with VCFS scored significantly lower than girls on school functioning (p < .05) and cognitive fatigue (p < .01). Compared with children with chronic conditions, children with VCFS scored lower on emotional (p < .01), social (p < .01), and school functioning (p < .001) but not on physical health. Parents described their children's strengths as humor, caring, kindness, persistence, and enthusiasm. CONCLUSIONS: Quality of life among children with VCFS is characterized by significant challenges in the cognitive, social, and emotional domains. These children have strengths that may be useful in coping with the daily challenges of this condition.