RESUMO
BACKGROUND: In countries which lack robust health care systems, congenital conditions such as cleft lip and/or palate deformities are often untreated in certain individuals. Many volunteer organizations have stepped in to fill this gap but certain factors, such as continuity of care, are yet to be studied for these clinics. METHODS: This is a retrospective cohort study of 167 pediatric patients with cleft lip and/or palate residing in El Salvador treated by a nongovernmental organizations between 2011 and 2020. This data was used in univariate and multivariable models to associate particular patient factors to their likelihood of following up to their annual clinic visits. RESULTS: Each 1-year increase in duration of follow-up was associated with a 27% decrease in the odds of attending a visit. In addition, 33.7% of cleft lip and 49.7% of cleft palate/cleft lip and palate patients returned at least once. Males had 36% higher odds of attending a return visit compared with females but this difference was not statistically significant. Time spent travelling to the clinic had no effect on follow-up rates. CONCLUSION: Nongovernmental organizations utilizing a diagonal care model should consider using more strategies to maximize continuity of care by increasing communication with patients and emphasizing the need of following up during clinic visits. Continued and increased collaboration with the local team is also of great importance.
Assuntos
Fenda Labial , Fissura Palatina , Masculino , Feminino , Humanos , Criança , Fenda Labial/cirurgia , Fissura Palatina/cirurgia , Estudos Retrospectivos , Seguimentos , El Salvador , VoluntáriosRESUMO
OBJECTIVES: Adapt the Spanish translation of VPI Effects on Life Outcome (VELO) instrument into Ecuadorian Spanish; test the resulting instrument for reliability and validity. METHODS: A cross-sectional, prospective design, set at a humanitarian mission within a community hospital. Linguistic validation: native Ecuadorian-Spanish speakers modified the Spanish VELO to Ecuadorian Spanish. Cognitive interviews were conducted with children with cleft palate (CP) and their parents (n = 50), guiding instrument modifications. An expert panel reviewed changes, resulting in the VELO-Ecuadorian dialect (VELO-Ec). INSTRUMENT ASSESSMENT: 88 participants with CP (88 parents, 46 children) and 33 non-cleft controls (33 adult, 11 children) completed the VELO-Ec, Spanish-Pediatric Voice Handicap Index (pVHI), and Spanish-Intelligibility in Context Scale (ICS). Internal consistency was assessed with Cronbach's alpha; test-retest reliability was assessed by calculating the intraclass correlation coefficient (ICC); standard error of measurement (SEM) was calculated. Concurrent validity was assessed with Pearson correlations of VELO-Ec with pVHI and ICS. Discriminant validity assessment used an established ICS cutoff. Construct validity was assessed by grouping patients by parent report of hypernasality and early vs. late cleft repair (>24 months) using the Wilcoxon Rank-Sum test. RESULTS: VELO-Ec showed excellent internal consistency (alpha 0.96) and test-retest reliability (ICC = 0.85, 95% CI 0.68-0.93, SEM 5.71). It had strong concurrent validity, correlating with ICS (r = 0.75, p < 0.001) and pVHI (r = -0.79, p < 0.001). Discriminant validity was strong with better VELO-Ec scores among subjects with normal vs. abnormal ICS score (median 95 & 61, p < 0.001). Strong construct validity was identified: those with parent-reported hypernasality had worse VELO-Ec scores than those without (median 59 & 75, p < 0.001). Those with repair before or after 24 months had similar VELO-Ec scores (p = 0.882). CONCLUSION: The VELO-Ec is a valid and reliable measure of VPI-related quality of life, useful to clinicians and researchers treating Ecuadorian CP patients, especially in areas with limited resources such as on humanitarian missions.
Assuntos
Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Equador , Feminino , Humanos , Masculino , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Insuficiência VelofaríngeaRESUMO
OBJECTIVE: Evaluating the safety and outcomes of premaxillary setback with posterior vomerine ostectomy in single-stage repair of complete bilateral cleft lip (CBCL) with severe premaxillary protrusion. DESIGN: Retrospective case series. SETTING: Multiple outreach surgical sites. PATIENTS/PARTICIPANTS: From 2012 to 2016, 41 patients with CBCL and severe premaxillary protrusion underwent posterior vomerine premaxillary setback (PVPS) by a single surgeon in Brazil, Ecuador, and Peru. Patients 4 months to 18 years old undergoing primary or revision CBCL surgery were eligible for inclusion in the study. Patients with diagnosed syndromes were excluded. INTERVENTIONS: Posterior vomerine premaxillary setback. MAIN OUTCOME MEASURES: Postoperative complications and postoperative aesthetic outcomes. RESULTS: The mean age at surgery was 3.7 ± 3.8 years, with an average follow-up time of 17.0 ± 13.9 months. Patients underwent their procedures in Brazil (71%), Ecuador (22%), and Peru (7%). The majority of patients were aged 2 years or less (56%), were males (54%), had undergone prior surgery (56%), and had not undergone preoperative surgical orthopedics (95%). None of the patients developed major complications. All patients were able to undergo PVPS with concomitant required procedures and had good aesthetic outcomes. CONCLUSIONS: Few reports have evaluated single-stage CBCL repair or revision with severe premaxillary protrusion using PVPS. Our study shows that this technique is safe and results in good aesthetic outcomes. Further follow-up with anthropometric patient data is needed to evaluate long-term postoperative outcomes.