Patient-Perceived Barriers to Accessing Cleft Care at a Tertiary Referral Center in São Paulo, Brazil

Ise, Ananda; Menezes, Camila Lohmann; Neto, João Dias de Toledo Arruda; Saluja, Saurab; Amundson, Julia R.; Jenny, Hillary E.; Massenburg, Benjamin B.; Citron, Isabelle; Alonso, Nivaldo

doi:10.1177/1055665618796018

Cited by 14 publications

(22 citation statements)

References 18 publications

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“…These findings are similar to a 2009 retrospective cohort study in North Carolina by Cassell et al in which 42.0% of children with CP were delayed for repair beyond 18 months of age (Cassell et al, 2009). In our overall cohort, 79.5% of children undergoing CP repair had a diagnosis of isolated CP, a more inconspicuous defect compared to CLP that can be more difficult to detect by referring physicians without proper training (Habel et al, 2006; Ise et al, 2019;). More specifically, incomplete CP especially isolated clefts of the soft palate can be more difficult to detect on digital inspection alone and may require additional visual inspection (Habel et al, 2006).…”

Section: Discussionmentioning

confidence: 96%

“…Despite these standards, multiple barriers to care can impede timely CL/P diagnosis, surgical repair, follow-up, and further interventions. Availability of surgeons can serve as a significant obstacle (Carlson et al, 2016b), and challenges such as financial cost, geographic accessibility, education, or cultural understanding of surgical need also may delay care (Adetayo et al, 2012; Cassell et al, 2013; Cassell et al, 2014; Massenburg et al, 2016; Yao et al, 2016; Carlson et al, 2016b; Swanson et al, 2017; Bennett et al, 2018; Dean et al, 2019; Ise et al, 2019; Kantar et al, 2019; Stock et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

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Factors Associated With Delay in Cleft Surgery at a Tertiary Children’s Hospital in a Major US Metropolitan City

Stoneburner

Munabi

Nagengast

et al. 2021

The Cleft Palate-Craniofacial Journal

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Objective: To identify factors associated with late cleft repair at a US tertiary children’s hospital. Design: Retrospective study of children with CL/P using Children’s Hospital Los Angeles (CHLA) records. Setting: US tertiary children’s hospital. Patients/Participants: Patients undergoing primary CL or CP repair at CHLA from 2009 to 2018. Main Outcome Measures: Proportion of children who had delayed primary CL repair or CP repair using CHLA and American Cleft Palate-Craniofacial Association (ACPA) guidelines and factors associated with late surgery. Results: In total, 805 patients—503 (62.5%) who had CL repair, 302 (37.5%) CP repair—were included. Using CHLA protocol, 14.3% of patients seeking CL repair had delayed surgery. Delay was significantly associated with female gender, non-Hispanic ethnicity, Spanish primary language, government insurance, bilateral cleft, cleft lip and palate (CLP), and syndromic diagnosis. Using ACPA guidelines, 5.4% had delayed surgery. Female gender and syndromic diagnosis were significantly associated with delay and remained significant after adjustment for confounders in multivariate models. For CP repair, 60.3% of patients had delayed surgery using CHLA protocol. Cleft lip and palate diagnosis, complete cleft, syndromic diagnosis, and longer travel distance were significantly associated with delay. Using ACPA guidelines, 28.5% had delayed surgery; however, significant association with patient variables was not consistently observed. Conclusions: Delay in cleft surgery occurs most often for patients seeking CP repair and is associated with female gender, non-Hispanic ethnicity, Spanish language, government insurance, and bilateral CL, CLP, or syndromic diagnoses. Initiatives should aim to optimize cleft surgery delivery for these subpopulations.

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Section: Discussionmentioning

confidence: 96%

Section: Introductionmentioning

confidence: 99%

Factors Associated With Delay in Cleft Surgery at a Tertiary Children’s Hospital in a Major US Metropolitan City

Stoneburner

Munabi

Nagengast

et al. 2021

The Cleft Palate-Craniofacial Journal

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“…Al respecto, uno de los pocos estudios publicados sobre distancias y tiempos hasta los centros de atención de FLAP en Estados unidos, encontró que los padres no consideraban las largas distancias como "un problema", aunque ese trabajo no valoró las características o los resultados de los tratamientos recibidos 33 . Otro estudio analizó las barreras al tratamiento percibidas por los padres encontrando que quienes mencionaron que era muy costoso el traslado hasta el centro tratante tenían más chance de haber realizado la cirugía tardíamente 34 .…”

Section: Discussionunclassified

Características del tratamiento recibido por los niños con fisura labio alvéolo palatina en Argentina

Cipolla¹,

Piola²,

Barbero³

et al. 2021

Andes pediatr

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Las fisuras labio palatinas (FLAP) son anomalías congénitas que afectan anatómica y funcionalmente la cara y boca, comprometiendo labio (FL), paladar (FP), o ambos (FL/FP).Objetivo: caracterizar el tratamiento de niños con FLAP en instituciones públicas en Argentina.Pacientes y Método: Estudio transversal en muestra aleatoria de 100 niños de la Red Flap. Se incluyeron niños con FL, FP y FL/FP aisladas, de ambos sexos, con peso nacimiento de 2500 gramos o más y edad gestacional mayor a 36 semanas. Se reportó fecha de nacimiento, hospital de nacimiento, peso nacimiento, edad gestacional, sexo, diagnóstico específico de la fisura, y datos de la cirugía inicial. Se realizó una encuesta telefónica a los progenitores de los niños. Para caracterizar el tratamiento se construyeron tres indicadores: interdisciplina, oportunidad e integralidad, que se compusieron de diferentes variables y según la suma del puntaje atribuido a cada una, se categorizó en: alto, medio o bajo según las pautas de tratamiento que usa el Programa Sumar.Resultados: Iniciaron tratamiento precoz el 30%. El 58% se operó oportunamente e hicieron seguimiento con las especialidades básicas el 29% de los niños. El alto nivel educativo materno se asoció con mayor probabilidad de tener tratamiento interdisciplinario (OR2,9; IC95% 1,3-6,8), integral (OR3,7; IC95% 1,6-8,7) y oportuno (OR2,9; IC95% 1,3-6,7).Conclusiones: Existen barreras para acceder a la atención, como las grandes distancias o la gestión de los turnos. La menor vulnerabilidad social de las familias se asoció con mayor probabilidad de recibir un tratamiento cercano a los estándares.

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“…This has also been observed in other regions of the country. A study by Ise et al (2019), conducted in Southeast Brazil, found that 54% of individuals underwent primary lip and palate repair later than recommended in the literature, concluding that the main barriers for the access of treatment were lack of available hospitals for surgery (54%) and lack of surgeons (51%).…”

Section: Discussionmentioning

confidence: 99%

“…According to the standardized treatment protocol in Brazil, primary lip surgery should be performed at around 3 months of age and palatoplasty at 12 months (Bertier et al, 2007). Studies conducted in developing countries concluded that patients living in remote areas with difficult access to health units receive treatment late and face several main barriers, such as lack of information, travel costs, lack of hospitals to perform surgery, and lack of financial support (Massenburg et al, 2016; Ise et al, 2019). In the Amazon region, specifically Northern Brazil, these difficulties are further complicated by the climate and geographic characteristics typical of the region, making it one of the main areas of the country with a scarcity of specialized health services.…”

Section: Introductionmentioning

confidence: 99%

Treatment of Cleft Lip and Palate in the Amazon Region in Brazil: Speech Results and Sociodemographic Aspects

Araújo

Alonso

Fukushiro

2021

The Cleft Palate-Craniofacial Journal

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Objective: To investigate the speech outcomes in individuals with cleft lip and palate (CLP) from the Amazon region and determine their correlation with sociodemographic factors. Design: Cross-sectional, prospective, single-blind study. Setting: Tertiary care institute in Manaus, Amazonas, Brazil. Patients: Four hundred twenty individuals with CLP, aged 4 to 57 years. Main Outcome Measures: The samples were judged by 3 speech pathologists experienced in the speech assessment of individuals with CLP. Hypernasality was scored using a 4-point scale, being 1 = absent, 2 = mild, 3 = moderate, and 4 = severe, and the active speech symptoms were classified as absent or present. The final score for each speech symptom was reached by consensus among the 3 examiners Descriptive analysis of sociodemographic data included origin, socioeconomic status, type of cleft, surgical technique employed, the age they underwent primary and secondary palatoplasty, and palatal fistula. Results: Absence of hypernasality was observed in 41% of the individuals, 18% had mild, 28% moderate, and 13% severe hypernasality. Active speech symptoms were observed in 57% of the individuals. Significant correlations were found between speech outcomes and the variables such as origin, socioeconomic status, age at primary and secondary palatoplasty, and presence of fistula. Conclusions: Most individuals with repaired CLP from the Amazon region presented speech disorders, characterized by hypernasality and active errors. Patients living outside the state capital, of low socioeconomic level, underwent palatoplasty late and with presence of palatal fistula tended to have the worst speech outcomes.

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Patient-Perceived Barriers to Accessing Cleft Care at a Tertiary Referral Center in São Paulo, Brazil

Abstract: Delays from diagnosis to treatment result in patients receiving delayed primary repairs. The commonest patient-perceived barriers are related to a lack of access to cleft care, which may represent a lack of awareness of available services.

Cited by 14 publications

References 18 publications

Factors Associated With Delay in Cleft Surgery at a Tertiary Children’s Hospital in a Major US Metropolitan City

Factors Associated With Delay in Cleft Surgery at a Tertiary Children’s Hospital in a Major US Metropolitan City

Características del tratamiento recibido por los niños con fisura labio alvéolo palatina en Argentina

Treatment of Cleft Lip and Palate in the Amazon Region in Brazil: Speech Results and Sociodemographic Aspects

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