The current situation of the cleft lip and palate patient in Brazil: access to the reference center

Abstract

Cleft lip and palate is estimated to occur in 1 out of every 700 births, resulting in nearly 200,000 children born with a cleft lip or palate each year worldwide. Unfortunately, in many low- and middle-income countries, this deformity is repaired later in life or not repaired at all. The surgical repair is essential for normal facial growth, velopharyngeal competence, appropriate dental occlusion, psychological adjustment, and communicative development. Additionally, surgical repair of cleft lips and palates is quite cost-effective, with a cost per DALY averted of $47-134.Despite the substantial benefits of cleft lip and palate repair, numerous children are not able to access surgical treatment around the world. In Brazil, only 14 of 27 states have a comprehensive cleft care center - burdening some families with long distances of travel and precluding many from receiving any care at all. The high volume of non-repaired cleft lips and palates in Brazil is unusual, as the country has the second largest society of plastic surgeons in the world and a universal national health system that covers 100% of the population. Multiple non-governmental organizations (NGO) are active in Brazil to alleviate this need. Data from Smile Train, which facilitates cleft lip and palate surgery by supporting local surgeons, have assessed physician-perceived barriers to care. To our knowledge, however, no studies have assessed patient-perceived barriers to care. Our study will utilize patient- or family-level survey data to identify perceived barriers to obtaining cleft care. Specifically, we seek to: 1. Understand basic demographics of families of children being treated by Smile Train. We plan to determine the age, gender, and familial structure of the patients and families receiving surgical care. 2. Understand process required to obtain cleft care and characterize delays in care; 3. Understand barriers to care through a patient-centered approach. Surgeons and healthcare workers have previously identified patient awareness, patient travel costs, lack of available staff, lack of trained professionals, poor patient health, lack of financial support and lack of equipment as key barriers to care. We plan to determine whether these are the same barriers identified by patients. Surveys, in a 23 question survey format, will be conducted in an interview format at the following locations: Centro de Atendimento Integral ao Fissurado Lábio Palatal (CAIF), Curitiba, Paraná, Brazil ; Hospital das Clínicas da Universidade de São Paulo (USP), São Paulo, São Paulo, Brazil; Hospital Doutor Fajardo (HDF), Manaus, Amazonas, Brazil; Instituto Materno Infantil de Pernambuco (IMIP), Recife, Pernambuco, Brazil. All patients presenting to these centers receiving surgical repair of a primary cleft lip or cleft palate will be included in this study. Patients and families will be recruited on post-operative day 0, during or after surgery, so as to avoid any perception of coercion. Patients will be recruited until 20 patients are accrued from each site.Surveys will be implemented by research assistants (medical students who are not part of the medical care team). The subject of the interviews will be the patient's primary care-giver or the patient him/herself if the patient is older than 18 years old and is deemed competent to participate by the research assistant. The surveys will be conducted in an interview format, in Portuguese. Survey data will be input into tablets at each site. Open-format comments will be individually read to identify common themes. (AU)