Perfil e qualidade de vida de pacientes com fissura labiopalatina que tiveram acesso tardio ao tratamento

Abstract

Objective: To analyze the clinical and sociodemographic profile of late-treated patients at the HULW Cleft Lip and Palate Service and to assess the quality of life of patients with cleft lip and palate (CLP) who received late treatment in Paraíba through the application of the CLEFT-Q. Methods: This study adopts a quantitative, descriptive-analytical, and cross-sectional approach, analyzing 2,713 patient records, categorizing them into two groups: non-late patients, who accessed the CLP service before the age of five, and late patients, who accessed the service at the age of five or older. The study considers social, dental, functional, psychological factors, health complications, and self-perception. Statistical analysis was conducted using Generalized Linear Models, applying Logistic Regression, Robust Poisson, Negative Binomial, and Gamma Model, with Logistic Regression (AIC = 3280.8) selected as the optimal model for data analysis. The variables analyzed included sex, diagnosis, and geographical location as predictors of late access. Additionally, the CLEFT-Q questionnaire was applied to assess social, psychological, and school-related functions in 57 late patients registered in the HULW cleft service. The statistical analysis of this data followed non-parametric inferential models, applying Mann-Whitney tests for sex, semi-arid region, rural zone, race/color, and income, and Kruskal-Wallis with post-hoc/Dunn tests for diagnosis, mesoregion, and macroregion of health, considering late access as the independent variable. Results: The findings were divided into four main sections: 1. Article 1: Epidemiological profile of patients with late access to the HULW cleft service: A Generalized Linear Models approach. Female patients (p-value = 0.011) had a higher prevalence of late access (24%).Type 3 clefts had later access compared to types 1 and 2, with respective prevalence rates of 21.3% and 67.7%. Syndromic clefts (type 5) had a 75% lower chance of late access (p-value = 0.021). Patients from the Sertão region of Paraíba had a 31.2% higher risk of late access compared to other regions; 2️. Article 2: Impact of late treatment on the quality of life of cleft lip and palate patients in Paraíba: An analysis using CLEFT-Q and non-parametric statistical methods. Diagnosis influenced quality of life perception in social (p-value = 0.00), psychological (p-value = 0.018), and school (p-value = 0.004) functions. Patients with Type 1 (pre-foramen) (p-value = 0.00) and Type 2 (trans-foramen) (p-value = 0.04) clefts reported a worse social function quality of life compared to Type 3 (post-foramen). Patients from the semi-arid region had a 52.63% prevalence of late access (p-value = 0.026). The mesoregion showed a marginal significance (p-value = 0.052) in social function, and being from a rural zone was associated with a marginal significance in psychological function (p-value = 0.059); 3. Analysis 1: Descriptive analysis of HULW patients based on the HRAC/SP and HULW protocol, which establishes the first surgery at three months of age. Under this criterion, the percentage of late patients would increase to 63.05%, with the highest concentration within the first 20 years of life; 4. Technical Product: Proposal for implementing a protocol for neonatal screening of cleft palate and submucous clefts in Brazil. Conclusions: The analysis of factors associated with delayed specialized care for CLP highlights regional, structural, and sociocultural inequalities that affect equity in healthcare access. Sex and geographic region are more significant determinants than cleft severity, with female patients at higher risk of late access, indicating barriers that could be addressed through gender equity policies and strengthening primary healthcare. The visibility of the cleft also influences referral, emphasizing the need for professional training in early diagnosis, particularly for less apparent clefts. Patients from the Sertão region of Paraíba face a higher risk of delayed care, reinforcing the urgency of decentralizing services and expanding sanitary transport infrastructure. Measures such as neonatal screening and professional training are crucial to reducing these disparities and ensuring timely access to treatment. Therefore, effective public policies should prioritize not only access to specialized care but also the reduction of diagnostic and referral inequalities, promoting greater equity and improved clinical outcomes for this population.