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.

Effectiveness of the corrective babbling speech treatment program for children with a history of cleft palate or velopharyngeal dysfunction.

OBJECTIVE: To investigate the effectiveness of a phonetic-based, parent-administered treatment to reduce cleft-related speech errors. DESIGN: Immediate treatment (IT) versus delayed treatment (DT) comparison followed by analysis of gains over approximately 4 months and again after a longer period of treatment for participants in both groups. PARTICIPANTS: Thirteen participants with a history of cleft palate or velopharyngeal dysfunction and speech disorder. INTERVENTION: After training, parents were instructed to conduct daily 10-minute sessions of phonetic drills with their children. MAIN OUTCOME MEASURES: Group differences in percent consonants correct (PCC) were compared between those who did and those who did not receive the treatment. Pre- and posttreatment PCC comparisons were made after approximately 4 months of treatment and after termination of treatment. RESULTS: Participants receiving Corrective Babbling therapy showed significant gains in PCC in limited contexts after 4 months of therapy. However, gains were not significantly greater for the IT versus DT group. Participants who continued with the treatment for longer than 4 months showed the greatest gains in PCC and had significant improvements in all speech contexts assessed. Parents reported satisfaction with the program. CONCLUSIONS: The results of this study indicate that this treatment shows promise for at least some children with a history of cleft palate and velopharyngeal dysfunction.

Feeding difficulties in children with CHARGE syndrome: prevalence, risk factors, and prognosis.

Children with CHARGE syndrome frequently experience long-term and complex feeding difficulties. This study investigated the prevalence and nature of feeding difficulties in a population of 39 children with CHARGE syndrome and explored the relationship between the clinical characteristics of the syndrome and feeding development. Information was collected via a survey (two questionnaires) completed by the parents. One questionnaire, the Pediatric Assessment Scale for Severe Feeding Problems, provided an objective measure of the current severity of feeding difficulties. Results of the survey indicated a high prevalence of long-term feeding issues in this population. Approximately 90% of the children had received tube feeding at some point in time. In contrast to previous literature, choanal atresia and heart malformations were not found to be significantly related to a higher severity of feeding difficulty or associated with long-term tube feeding. Cranial nerve dysfunction was found to be the primary clinical feature of CHARGE syndrome impacting feeding development, reflected in a high prevalence of weak sucking/chewing, swallowing difficulty, gastroesophageal reflux, and aspiration. The presence of these conditions in infancy suggests the likelihood of long-term feeding difficulty and warrants the ongoing attention of feeding specialists.

Early oral sensory experiences and feeding development in children with CHARGE syndrome: a report of five cases.

Children with CHARGE syndrome commonly experience feeding and swallowing problems. Difficulties may be associated with congenital structural anomalies, motor impairment, and/or oral sensory impairment. For many children with CHARGE syndrome, the introduction of functional oral feeding is delayed and there are often long-term feeding complications. Oral aversion or defensiveness is a frequent serious issue; however, it is uncertain whether this is a primary sensory disorder or secondary to delayed and/or negative oral sensory and feeding experiences. This article examines in detail the early oral sensory and feeding experiences of five children with CHARGE syndrome, through a review of medical records and caregiver questionnaires. Findings indicate variable early oral sensory experiences in this group of children, with all of the children having some difficulty or delay in the development of oral feeding and swallowing. The nature of these difficulties and the potential contributory factors are discussed.

Pediatric assessment scale for severe feeding problems: validity and reliability of a new scale for tube-fed children.

BACKGROUND: This study reports data on the validity and reliability of a new parent report measure, the Pediatric Assessment Scale for Severe Feeding Problems, designed to assess progress in the development of oral eating skills for children who need prolonged tube feeding. METHODS: The questionnaire was completed by parents of 3 groups of children. The first group consisted of 17 children who received all of their nutrition by tube feedings, a second group of 30 children who were oral eaters but required supplementation by tube feedings, and a third group of 27 children who were referred for feeding difficulties but were not receiving any tube feeding. A subset of parents from each group completed the measure a second time approximately 2 to 4 weeks after completing the initial questionnaire in order to examine the reliability of the measure. RESULTS: The mean scores (scale of 0 to 66) on the measure were 7.3 for completely tube-fed children, 30.0 for partially tube-fed children, and 46.8 for referred, non-tube-fed children. The correlation between first and second administration of the measure was .98. CONCLUSIONS: The validity and reliability of the Pediatric Assessment Scale for Severe Feeding Problems appears to be adequate. The new measure should allow clinicians to better rate initial severity of feeding difficulties and to track the progress of children as they advance from being totally tube-fed to completely orally fed.