Interdisciplinary craniofacial teams compared with individual providers: is orofacial cleft care more comprehensive and do parents perceive better outcomes?

OBJECTIVE: The primary objective was to examine whether children with orofacial clefts received more comprehensive care and whether their parents perceived better outcomes if the care was delivered by interdisciplinary teams compared with individual providers. DESIGN: Data about services received and outcomes were collected from mothers of children with orofacial clefts. PARTICIPANTS: Mothers of children born between 1998 and 2003 with orofacial clefts from Arkansas, Iowa, and New York who participated in the National Birth Defects Prevention Study were eligible. MAIN OUTCOME MEASURE(S): Services and treatments received and maternal perception of cleft care, health status, aesthetics, and speech were evaluated by team care status. RESULTS: Of 253 children, 24% were not receiving team care. Of those with cleft lip and palate, 86% were enrolled in team care. Compared with children with team care, those without had fewer surgeries and were less likely to have seen a dentist, received a hearing test, or had a genetic consultation. Mothers of children lacking team care were twice as likely to give lower ratings for overall cleft care; maternal perceptions of global health, facial appearance, and speech did not differ by team care status. CONCLUSIONS: Recommended care tended to be received more often among those with team care. A larger, longitudinal study might answer questions about whether team care provides the best care and the role that type and severity of the condition and racial/ethnic differences play in the services received and outcomes experienced.

Evaluation of a disease-specific instrument for idiopathic clubfoot outcome.

UNLABELLED: In 2001, Roye et al. developed a disease-specific instrument (DSI) to measure outcomes of treatment for clubfoot. We assessed this instrument using a cohort of 62 patients, ages 5 through 12 years (mean, 8.6 years), with idiopathic clubfoot who were treated as infants by various methods. Treatment groups were defined by whether the patient received joint-invasive surgery (posterior or posteromedial release surgery) or joint-sparing treatment only (manipulation and casting with or without tendo-Achilles lengthening or anterior tibial tendon transfer). The DSI scales demonstrated internal consistency reliability of 0.74 to 0.85 using Cronbach's alpha. Higher (better) DSI scores were associated with "excellent" general health ratings and better health-related quality of life; lower DSI score were related to special healthcare needs. Patients treated using joint-sparing techniques only (eg, Ponseti technique) had higher DSI scores than those who had received joint-invasive surgery. DSI scores for patients who had received posterior or posterior medial release surgery were very similar to those reported by Roye et al. in New York for a comparable group of patients. Our findings suggest the DSI is sensitive to differences in treatment technique or underlying severity of disease. These data support the use of the Roye DSI as an outcome measure for idiopathic clubfoot in children. LEVEL OF EVIDENCE: Level III, diagnostic study. See the Guidelines for Authors for a complete description of levels of evidence.