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

BACKGROUND: In low- and middle-income countries, poor access to care can result in delayed surgical repair of orofacial clefts leading to poor functional outcomes. Even in Brazil, an upper middle-income country with free comprehensive cleft care, delayed repair of orofacial clefts commonly occurs. This study aims to assess patient-perceived barriers to cleft care at a referral center in São Paulo. METHODS: A 29-item questionnaire assessing the barriers to care was administered to 101 consecutive patients (or their guardians) undergoing orofacial cleft surgery in the Plastic Surgery Department in Hospital das Clínicas, in São Paulo, Brazil, between February 2016 and January 2017. RESULTS: A total of 54.4% of patients had their first surgery beyond the recommended time frame of 6 months for a cleft lip or cleft lip and palate and 18 months for a cleft palate. There was a greater proportion of isolated cleft palates in the delayed group (66.7% vs 33.3%). Almost all patients had a timely diagnosis, but delays occurred from diagnosis to repair. The mean number of barriers reported for each patient was 3.8. The most frequently cited barriers related to lack of access to care include (1) lack of hospitals available to perform the surgery (54%) and (2) lack of availability of doctors (51%). CONCLUSION: 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.

Patient-perceived barriers to surgical treatment of cleft lip and palate in Brazil: A multi-region study.

INTRODUCTION: Many patients worldwide are unable to access timely primary repair of cleft lip and palate. The aim of this study was to assess patient-perceived barriers to accessing timely cleft lip and palate repair across Brazil. METHODS: A 29-item questionnaire was applied to patients undergoing surgery for cleft lip and/or palate across five contrasting sites in Brazil from February 2016 to November 2017. Differences in patient timelines, demographics, and patient-reported barriers were compared by region. A multivariate logistic regression was used to determine predictors of delayed care. RESULTS: Of 181 patients, 42% of patients received timely primary surgical repair. The age of the patient at the interview was 82 months (standard deviation [SD] 107) and 52% were male. The majority of delays occurred between diagnosis and primary surgical repair. The mean number of barriers to accessing timely surgical care cited by each patient was 3.77. The most common barrier was perceived "lack of hospitals that provided the surgery in my area" (48% (n = 86)). Univariate logistic regression showed increased odds of receiving late care in the state of Amazonas (odds ratio [OR] 2.91; 95% confidence interval [CI] 1.07-7.96; P = 0.037) or Para (OR 4.46; 95% CI 1.09-19.70; P = 0.037). Multivariate logistic regression determined predictors of delayed care to be female sex (OR = 2.05; 95% CI 1.05-3.99; P = 0.035) and perceived poor availability of care (OR = 0.045; 95% CI 1.02-4.37; P = 0.045). CONCLUSION: The majority of patients in Brazil are not receiving timely primary repair of their clefts. Improvements in the coordination of care, patient education and patient empowerment are required.