Care for cleft lip and palate patients: modeling proposal for the assessment of specialized centers in Brazil

Ana Maria Freire de Lima Almeida Sônia Cristina Lima Chaves Carla Maria Lima Santos Sisse Figueredo de Santana About the authors

RESUMO

Este estudo elaborou um modelo lógico de atenção à pessoa com fissura labiopalatina, para subsidiar avaliações em centros de reabilitação do País. Foram revisadas as diretrizes internacionais da área, publicações de especialistas do Hospital de Reabilitação de Anomalias Craniofaciais da Universidade de São Paulo e do Ministério da Saúde. O modelo contempla duas dimensões - Gestão da atenção e Reabilitação do paciente -, além de demarcar objetivos, atividades e resultados necessários para a reabilitação integral do indivíduo. A modelização da intervenção é passo essencial para a elaboração do instrumento de avaliação dessa atenção, que poderá ser reproduzida nos vários estados brasileiros.

PALAVRAS-CHAVE:
Fenda labial; Fissura palatina; Avaliação de programas e projetos de saúde; Política de saúde

ABSTRACT

This study has designed a logic model of care for individuals with cleft lip and palate in order to subsidize the assessment of rehabilitation centers in the Country. International guidelines, as well as publications by experts from the Hospital for Rehabilitation of Craniofacial Anomalies - University of São Paulo and from the Ministry of Health have been reviewed. The logic model comprises two dimensions - Care Management and Patient Rehabilitation - and defines objectives, interventions and necessary results for the integral rehabilitation of the individual. The intervention modeling is an essential step for the design of the assessment tool, which may be replicated in other Brazilian states.

KEYWORDS:
Cleft lip; Cleft palate; Program evaluation; Health policy

Introduction

The cleft lip and/or palate (CLP) is the most common diagnosis of craniofacial malformation in newborn babies (MARTELLI et al., 2012MARTELLI, D. B. R. et al. Non sindromic cleft lip and palate: relationship between sex and clinical extension. Braz J Otorhinolaryngol, São Paulo, v. 78, n. 5, p. 116-120, 2012.). The worldwide prevalence is 1.53 cases for every thousand live births and in Brazil it ranges from 0.19 to 1.54 for every thousand live births (MARTELLI ET AL., 2012MARTELLI, D. B. R. et al. Non sindromic cleft lip and palate: relationship between sex and clinical extension. Braz J Otorhinolaryngol, São Paulo, v. 78, n. 5, p. 116-120, 2012.; SOUZA-FREITAS et al., 2004SOUZA-FREITAS, J. A. et al. Tendência familiar das Fissuras labiopalatinas. R Dental Press Ortodon. Ortop. Facial, Maringá, v. 9, n. 4, p. 74-78, jul./ago., 2004.).

The CLP results from failures in the anatomical fusion of facial processes between the second and twelfth weeks of intrauterine life, and may be classified according to the anatomical involvement as: cleft lip, cleft palate, cleft lip and palate, and rare facial clefts. Concerning the extent, defects may be considered as: complete or incomplete, unilateral or bilateral (BORGES et al., 2014BORGES, A. R. et al. Fissuras labiais e/ou palatinas não sindrômicas: determinantes ambientais e genéticos. Revista Bahiana de Odontologia, Salvador, v. 5, n. 1, p. 48-58, jan. 2014.). The etiological factors cited are genetic, mainly those related to the individual (mutations and polymorphism) that interact with environmental factors such as: nutritional deficiency, alcoholism, and tabagism (SOUZA-FREITAS et al., 2004SOUZA-FREITAS, J. A. et al. Tendência familiar das Fissuras labiopalatinas. R Dental Press Ortodon. Ortop. Facial, Maringá, v. 9, n. 4, p. 74-78, jul./ago., 2004.).

For the complete rehabilitation of individuals with CLP, a multidisciplinary approach is needed, involving medicine, dentistry, speech therapy, psychology, nursing, and social service. Health care in this area reaches all levels of complexity and in several countries the interventions dealing with this problem are performed in specialized centers and in public and private hospitals (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.). In Brazil, the history of craniofacial anomalies care is represented by the struggle of professionals, researchers, and families who, in the last 35 years, have strived for the inclusion of these congenital defects in the agenda of health policies (MONLLEÓ; GIL-DA-SILVA-LOPES, 2006MONLLEO, I. L.; GIL-DA-SILVA-LOPES, V. L. Anomalias craniofaciais: descrição e avaliação das características gerais da atenção no Sistema Único de Saúde. Cad. Saúde Pública, Rio de Janeiro, v. 22, n. 5, p. 913-922, maio 2006.).

In the 1990s, the first initiatives for the care of individuals with CLP in the Unified Health System (Sistema Único de Saúde - SUS) took place. In 1993, there was the introduction of procedures for the correction of the CLP table in the Hospital Data System (Sistema de Informações Hospitalares of SUS - SIH/SUS) (BRASIL, 1993______. Ministério da Saúde. Portaria SAS/MS no 126, de 17 de setembro de 1993. Cria grupos e procedimentos para tratamento de lesões labiopalatais na tabela SIH/SUS, e dá outras providências. Diário Oficial [da] União, Brasília, DF, 21 set. 1993. Disponível em: <http://sna.saude.gov.br/legisla/legisla/alta_lab_p/SAS_P126_93lalta_ab_p.doc>. Acesso em: 2 fev. 2017.
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), followed by the publication of the Directive Nr 62, of April 19, 1994, of the Secretariat of Health Care/Ministry of Health (Secretaria de Atenção à Saúde/Ministério da Saúde - SAS/MS), that established the norms for the registration of hospitals and services of rehabilitation in the area (BRASIL, 1994______. Ministério da Saúde. Portaria SAS/MS nº 62, de 19 de abril de 1994. Normaliza cadastramento de hospitais que realizem procedimentos integrados para reabilitação estético-funcional dos portadores de má-formação lábio-palatal para o Sistema Único de Saúde. Diário Oficial [da] União, Brasília, DF, 20 abr. 1994. Disponível em: <http://sna.saude.gov.br/legisla/legisla/alta_lab_p/SAS_P62_94alta_lab_p.doc>. Acesso em: 17 jan. 2017.
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). Subsequently, the Reference Network for the Treatment of Craniofacial Anomalies (Rede de Referência no Tratamento de Deformidades Craniofaciais - RRTDC) (BRASIL, 2002______. Ministério da Saúde. Reduzindo as desigualdades e ampliando o acesso à assistência à saúde no Brasil 1998-2002. Brasília, DF: Ministério da Saúde, 2002.) was created and currently it has 28 registered centers (BRASIL, 2015______. Ministério da Saúde. Secretaria de Atenção à Saúde. Relatório de Gestão 2014. Brasília, DF: Ministério da Saúde, 2015. Disponível em: <http://portalsaude.saude.gov.br/images/pdf/2016/marco/31/Relat--rio-de-Gest--o-da-SAS-2015-Final.pdf>. Acesso em: 2016.
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).

Some studies were found about the operation of the Brazilian rehabilitation centers. To be highlighted is a series of articles published by the researchers from the Hospital for Rehabilitation of Craniofacial Anomalies of the University of São Paulo (Hospital de Reabilitação de Anomalias Craniofaciais da Universidade de São Paulo - HRAC/USP) (SOUZA-FREITAS et al., 2012a______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 1: overall aspects. J. Appl. Oral Sci., Bauru, v. 20, n. 1, p. 9-15, 2012a., 2012B______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 2: Pediatric Dentistry and Orthodontics. J. Appl. Oral Sci., Bauru, v. 20, n. 2, p. 268-281, 2012b., 2012C______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 3: Oral and Maxillofacial Surgery. J. Appl. Oral Sci., Bauru, v. 20, n. 6, p. 673-679, 2012c., 2013______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 4: Oral Rehabilitation. J. Appl. Oral Sci., Bauru, v. 21, n. 3, p. 284-292, 2013.), that describe general aspects of the pathology and the treatment protocol used by the professionals of the institution, with emphasis on the areas of plastic surgery, speech therapy, dental pediatrics, orthodontics, maxillofacial surgery, and oral rehabilitation (dental prosthesis, dental implant). Monlleó e Gil-da-Silva-Lopes (2006)MONLLEO, I. L.; GIL-DA-SILVA-LOPES, V. L. Anomalias craniofaciais: descrição e avaliação das características gerais da atenção no Sistema Único de Saúde. Cad. Saúde Pública, Rio de Janeiro, v. 22, n. 5, p. 913-922, maio 2006. have described characteristics of 25 centers that belong to the RRTDC gathered through semi-structured questionnaires sent by mail. The authors found that there is a prevalence of services in the Southeastern region of Brazil, in universities and in the cleft lip and palate field, predominately with public funding; the majority of teams follow North-American parameters and protocols are used in 70% of the sample.

The increasing number of services providing care for individuals with CLP in SUS, from 19 centers in 2008 to 28 centers in 2015 (BRASIL, 2015______. Ministério da Saúde. Secretaria de Atenção à Saúde. Relatório de Gestão 2014. Brasília, DF: Ministério da Saúde, 2015. Disponível em: <http://portalsaude.saude.gov.br/images/pdf/2016/marco/31/Relat--rio-de-Gest--o-da-SAS-2015-Final.pdf>. Acesso em: 2016.
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), indicates that assessment processes in this area may reveal how the implementation of this care in the Brazilian states has taken place, considering the complexity of factors that may interfere with the management and operation of health interventions (CONTANDRIOPOULOS, 2006CONTANDRIOPOULOS, A. P. Avaliando a institucionalização da avaliação. Ciência & Saúde Coletiva, Rio de Janeiro, v. 11, n. 3, p. 705-711, set. 2006.). Health assessment, understood as a value judgment of a health intervention (policy, planning, or practice (HARTZ; VIEIRA-DA-SILVA, 2005HARTZ, Z. M. A.; VIEIRA-DA-SILVA, L. M. (Org.). Avaliação em Saúde: dos modelos teóricos às práticas na avaliação de programas e sistemas de saúde. Salvador: Edufba; Rio de Janeiro: Fiocruz, 2005, 275 p.), may favor individual and collective apprenticeship and become an excellent instrument of transformation and innovation in the health system by enabling a critical view of the established norm (CONTANDRIOPOULOS, 2006CONTANDRIOPOULOS, A. P. Avaliando a institucionalização da avaliação. Ciência & Saúde Coletiva, Rio de Janeiro, v. 11, n. 3, p. 705-711, set. 2006.).

In this sense, the Ministry of Health (Ministério da Saúde - MS) has created in 2013 a Work Group in the area of CLP, and has defined as one of its goals for 2014 the achievement of the restructuring of the specialized care, with the creation of criteria for its organization, planning, and monitoring, with specific guidelines (BRASIL, 2014______. Ministério da Saúde. Secretaria de Atenção à Saúde. Relatório de Gestão 2013. Brasília, DF: Ministério da Saúde, 2014. Disponível em: <http://portalsaude.saude.gov.br/images/pdf/2014/abril/01/relatorio-de-gestao-sas-2013.pdf>. Acesso em: 20 mar. 2016.
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). These goals have been maintained in the Management Reports for 2015 and 2016 (BRASIL, 2014______. Ministério da Saúde. Secretaria de Atenção à Saúde. Relatório de Gestão 2013. Brasília, DF: Ministério da Saúde, 2014. Disponível em: <http://portalsaude.saude.gov.br/images/pdf/2014/abril/01/relatorio-de-gestao-sas-2013.pdf>. Acesso em: 20 mar. 2016.
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, 2015______. Ministério da Saúde. Secretaria de Atenção à Saúde. Relatório de Gestão 2014. Brasília, DF: Ministério da Saúde, 2015. Disponível em: <http://portalsaude.saude.gov.br/images/pdf/2016/marco/31/Relat--rio-de-Gest--o-da-SAS-2015-Final.pdf>. Acesso em: 2016.
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), thus highlighting a gap in the improvement of this policy within the governmental agenda.

In the planning of an evaluation process, the elaboration of a logic model stands as one of the initial steps. This model can be defined as a visual scheme that presents how an intervention should be implemented and what results are expected (HARTZ; VIEIRA-DA-SILVA, 2005HARTZ, Z. M. A.; VIEIRA-DA-SILVA, L. M. (Org.). Avaliação em Saúde: dos modelos teóricos às práticas na avaliação de programas e sistemas de saúde. Salvador: Edufba; Rio de Janeiro: Fiocruz, 2005, 275 p.). The modeling also reveals the set of necessary hypotheses for the intervention to enable the improvement of a given problematic situation, with the systematization of these hypotheses as the theory of the program (CHAMPAGNE et al., 2011CHAMPAGNE, F. et al. Modelizar as intervenções. In: BROUSSELLE, A. et al. (Org.). Avaliação: Conceitos e métodos. Rio de Janeiro: Fiocruz, 2011. p. 61-74.). The literature on evaluation highlights that there is no consensus on the construction of these models; there are authors who make a distinction between the logic model and the theory of the program, whereas most authors use these two expressions in different ways (HARTZ; VIEIRA-DA-SILVA, 2005HARTZ, Z. M. A.; VIEIRA-DA-SILVA, L. M. (Org.). Avaliação em Saúde: dos modelos teóricos às práticas na avaliação de programas e sistemas de saúde. Salvador: Edufba; Rio de Janeiro: Fiocruz, 2005, 275 p.; CHAMPAGNE ET AL., 2011CHAMPAGNE, F. et al. Modelizar as intervenções. In: BROUSSELLE, A. et al. (Org.). Avaliação: Conceitos e métodos. Rio de Janeiro: Fiocruz, 2011. p. 61-74.). Therefore, the objective of this study was to formulate a logic model of care to individuals with cleft lip and palate that may later subsidize the evaluation of the implementation of this care in rehabilitation centers in Brazil.

Methods

This is a study of modeling the care for individuals with cleft lip and palate. This care involves prevention, diagnosis, and rehabilitation (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.). In this study, the evaluation focused on diagnosis and rehabilitation actions, with emphasis on rehabilitation comprising early intervention, adequate use of technology, ongoing care, and several consultations aiming at the reduction of the individual's functional impairments, quality of life improvement, and social inclusion (RIBEIRO, 2010RIBEIRO, C. T. M. et al. O sistema público de saúde e as ações de reabilitação no Brasil. Rev. Panam. Salud Publica, Washington, DC, v. 28, n. 1, p. 43-48, 2010.).

The logic model designed represents the modeling of the care for individuals with CLP according to the specialized literature (figure 1). At first, a review was made of the guidelines and international recommendations of the American Cleft Palate - Craniofacial Association (ACPA) (ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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, 2015_______. Standards for Approval of Cleft Palate and Craniofacial Teams: Commission on Approval of Teams. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Standards-2015.pdf>. Acesso em: 20 jun. 2015.
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) and of the World Health Organization (WHO) (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.). These are the two main organizations that have published guidelines considered to be references in the area of craniofacial anomalies, including cleft lip and palate. The ACPA is an international non-profit organization of health care professionals from the United States of America, Canada and other countries who perform research on cleft and craniofacial anomalies for over 65 years (ACPA, 2015_______. Standards for Approval of Cleft Palate and Craniofacial Teams: Commission on Approval of Teams. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Standards-2015.pdf>. Acesso em: 20 jun. 2015.
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). WHO has published the document 'Global Strategies to Reduce the Health-Care Burden of Craniofacial Anomalies', the result of a collaborative project by specialists from several countries, initiated in 2000. WHO has incorporated the guidelines for the care of individuals with CLP produced by the study Eurocleft Report, a multi-centric research conducted in Europe that has stimulated the improvement of services and respective teams (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.). The main aspects of these documents are summarized in chart 1.

Figure 1
Logic model of care for individuals with cleft lip and palate (CLP) according to guidelines from WHO (2002)WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002., ACPA (2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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; 2015)_______. Standards for Approval of Cleft Palate and Craniofacial Teams: Commission on Approval of Teams. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Standards-2015.pdf>. Acesso em: 20 jun. 2015.
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, publications of HRAC/USP and Directive SAS/MS Nr 62, of April 19, 1994

Chart 1
Main international guidelines and recommendations for care services for individuals with CLP

The proposals found in the various publications of the HRAC/USP (TRINDADE; SILVA-FILHO, 2007TRINDADE, I. E. K.; SILVA-FILHO, O. G. (Org.). Fissuras labiopalatinas: uma abordagem interdisciplinar. São Paulo: Editora Santos, 2007.; SOUZA-FREITAS et al., 2012a______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 1: overall aspects. J. Appl. Oral Sci., Bauru, v. 20, n. 1, p. 9-15, 2012a., 2012B______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 2: Pediatric Dentistry and Orthodontics. J. Appl. Oral Sci., Bauru, v. 20, n. 2, p. 268-281, 2012b., 2012C______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 3: Oral and Maxillofacial Surgery. J. Appl. Oral Sci., Bauru, v. 20, n. 6, p. 673-679, 2012c., 2013______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 4: Oral Rehabilitation. J. Appl. Oral Sci., Bauru, v. 21, n. 3, p. 284-292, 2013.) were also analyzed. This institution has over 50 years of experience with the rehabilitation of these patients and is known as a reference all over Latin America and also by WHO (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.). The Directive SAS/MS Nr 62 has also been analyzed for the elaboration of the logic model for the care to individuals with CLP (BRASIL, 1994______. Ministério da Saúde. Portaria SAS/MS nº 62, de 19 de abril de 1994. Normaliza cadastramento de hospitais que realizem procedimentos integrados para reabilitação estético-funcional dos portadores de má-formação lábio-palatal para o Sistema Único de Saúde. Diário Oficial [da] União, Brasília, DF, 20 abr. 1994. Disponível em: <http://sna.saude.gov.br/legisla/legisla/alta_lab_p/SAS_P62_94alta_lab_p.doc>. Acesso em: 17 jan. 2017.
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).

The logic of 'if - then' was used to build the relationship between objectives, activities, and results of care to individuals with CLP in the model. Following this logic, 'if' the actions are carried out, 'then' the products are obtained, which, by its turn, enable the existence of intermediate results. If intermediate results occur, then there is a final result that will lead to the achievement of the intervention's objective, which here represents the rehabilitation of the individual with CLP (CASSIOLATO; GUERESI, 2010CASSIOLATO, M.; GUERESI, S. Como elaborar modelo lógico: roteiro para formular programas e organizar avaliação. Brasília, DF: Ipea, 2010.).

To help understanding the path that a patient has to go through during the rehabilitation process, a flow chart is presented in (figure 2) based on the publications reviewed for the intervention modeling (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.; ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
http://www.acpa-cpf.org/uploads/site/Par...
, 2015_______. Standards for Approval of Cleft Palate and Craniofacial Teams: Commission on Approval of Teams. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Standards-2015.pdf>. Acesso em: 20 jun. 2015.
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; TRINDADE; SILVA-FILHO, 2007TRINDADE, I. E. K.; SILVA-FILHO, O. G. (Org.). Fissuras labiopalatinas: uma abordagem interdisciplinar. São Paulo: Editora Santos, 2007.; SOUZA-FREITAS et al., 2012a______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 1: overall aspects. J. Appl. Oral Sci., Bauru, v. 20, n. 1, p. 9-15, 2012a., 2012B______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 2: Pediatric Dentistry and Orthodontics. J. Appl. Oral Sci., Bauru, v. 20, n. 2, p. 268-281, 2012b., 2012C______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 3: Oral and Maxillofacial Surgery. J. Appl. Oral Sci., Bauru, v. 20, n. 6, p. 673-679, 2012c., 2013______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 4: Oral Rehabilitation. J. Appl. Oral Sci., Bauru, v. 21, n. 3, p. 284-292, 2013.).

Figure 2
Flow chart of the rehabilitation of the individual with cleft lip and palate

*Cheiloplasty: lip repair surgery.

**Palate surgery: palate repair surgery.

***Rhinoplasty: nasal repair surgery (performed when necessary).

****Orthognathic surgery: surgery of the mandibular/maxillary complex (performed when necessary).

Results and discussion

Logic model of care for individuals with cleft lip and palate

The logic model of care for individuals with cleft lip and palate (CLP) created (figure 1) comprises in the first part the objectives related to the management dimension based on the international recommendations (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.; ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
http://www.acpa-cpf.org/uploads/site/Par...
, 2015_______. Standards for Approval of Cleft Palate and Craniofacial Teams: Commission on Approval of Teams. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Standards-2015.pdf>. Acesso em: 20 jun. 2015.
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). Management refers to the political-administrative conduction of a system and in this study it has been divided in two sub-dimensions: organization and management of interventions. In the second part of the model are the objectives of the dimension rehabilitation of the patient (SOUZA-FREITAS et al., 2012a______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 1: overall aspects. J. Appl. Oral Sci., Bauru, v. 20, n. 1, p. 9-15, 2012a.). Hartz and Vieira-da-Silva (2005HARTZ, Z. M. A.; VIEIRA-DA-SILVA, L. M. (Org.). Avaliação em Saúde: dos modelos teóricos às práticas na avaliação de programas e sistemas de saúde. Salvador: Edufba; Rio de Janeiro: Fiocruz, 2005, 275 p.) point out that in the logic model of a program or intervention there should be: essential and secondary components, services related to practices required to carry out the components, and expected outcomes, as well as goals and effects on the populations' health conditions.

The organization of care of cleft lip and palate is internationally consolidated through specialized centers (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.; ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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), based on evidences, especially in the biomedical perspective. The reviewed literature shows that for the rehabilitation of this defect the best results are produced by interventions at specific moments of craniofacial growth and development, with ongoing rehabilitation treatment, allied to the existence of specialized and qualified multi-professional team with clinical and surgical experience (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.; SOUZA-FREITAS et al., 2012a______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 1: overall aspects. J. Appl. Oral Sci., Bauru, v. 20, n. 1, p. 9-15, 2012a.).

In this study, besides the prevailing biomedical perspective in the sphere of care for the individual with CLP, there was the aggregation to the logic model of elements of service management that may potentiate the compliance with SUS principles and guidelines, from the understanding that the social support of SUS political project is one of the dimensions of management (SOUZA, 2009SOUZA, L. E. P. O SUS necessário e o SUS possível: estratégias de gestão. Uma reflexão a partir de uma experiência concreta. Ciência & Saúde Coletiva, Rio de Janeiro, n. 14, v. 3, p. 911-918, 2009.).

There is consensus in the literature on the need and relevance of the assessment of health interventions; however, it is necessary to broaden the debate on the theoretical-conceptual approaches and the most adequate models (COSTA et al., 2015COSTA, J. M. B. S. Desempenho de intervenções de saúde em países da América Latina: uma revisão sistemática. Saúde em Debate, Rio de Janeiro, v. 39, n. esp., p. 307-319, dez. 2015.). The modeling proposal presented here may contribute for the improvement of this policy, considering that since 1993 SUS provides resources for the expansion of these services but has not yet achieved the establishment of a policy for the assessment of their implementation. Work and power relationships and disputes between the various stakeholders present in the social space of these rehabilitation centers require deepening and complexification of the logic model; they have not been included in the object of this article and may be studied in the future.

The management dimension

Regarding care organization, the following items were highlighted: establishment of the multidisciplinary team of specialists with a coordinator; implementation and maintenance of adequate premises, with regular input provision; establishment of clinical treatment protocol agreed upon between the team members; and implementation of a register and medical record system (ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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; WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.). In the long term these aspects would result in the achievement of excellence in the organization of the service and the data system with the expansion of care delivery.

The review of the international guidelines showed that the documents published by ACPA (2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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, 2015)_______. Standards for Approval of Cleft Palate and Craniofacial Teams: Commission on Approval of Teams. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Standards-2015.pdf>. Acesso em: 20 jun. 2015.
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comprise more information on the service and role of each professional in the team of care for the individual with CLP in comparison with WHO publication (2002)WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.. Another aspect is the minimum composition of the service team regarding specialties. In the North-American proposal, the team should comprise professionals from the following areas: surgery, orthodontics, otolaryngology, speech-language pathology, psychology, social work, and nursing (STRAUSS, 1998STRAUSS, R. P. The American Cleft Palate-Craniofacial Association (ACPA) Team Standards Committee. Cleft Palate and Craniofacial Teams in the United States and Canada: A National Survey of Team Organization and Standards of Care. Cleft Palate-Craniofacial Journal, Pittsburgh, v. 35, n. 6, p. 473-80, 1998.). ACPA (2009)AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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does not include a geneticist in the minimum team, but considers that clinical genetic evaluation is a key component in the management of patients with congenital craniofacial anomalies and should include: diagnosis; recurrence risk counseling; and counseling regarding prognosis. OMS (2002)WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002. includes the clinical genetics professional in the minimum service team.

In Brazil, the Directive SAS/MS Nr 62, of April 19, 1994, defines that the services of care to CLP should have specialists in the areas of medicine (anesthesiology, plastic surgery, medical clinic, otolaryngology, pediatrics); dentistry (maxillofacial surgery, prosthodontics, pediatric dentistry, orthodontics, prosthesis); speech-language pathology; psychology; social work; nursing; physiotherapy; nutrition; and family assistance (BRASIL, 1994______. Ministério da Saúde. Portaria SAS/MS nº 62, de 19 de abril de 1994. Normaliza cadastramento de hospitais que realizem procedimentos integrados para reabilitação estético-funcional dos portadores de má-formação lábio-palatal para o Sistema Único de Saúde. Diário Oficial [da] União, Brasília, DF, 20 abr. 1994. Disponível em: <http://sna.saude.gov.br/legisla/legisla/alta_lab_p/SAS_P62_94alta_lab_p.doc>. Acesso em: 17 jan. 2017.
http://sna.saude.gov.br/legisla/legisla/...
). Monlleó and Gil-da-Silva-Lopes (2006)MONLLEO, I. L.; GIL-DA-SILVA-LOPES, V. L. Anomalias craniofaciais: descrição e avaliação das características gerais da atenção no Sistema Único de Saúde. Cad. Saúde Pública, Rio de Janeiro, v. 22, n. 5, p. 913-922, maio 2006. have carried out a study with 29 care centers for craniofacial anomalies taking part in RRTDC of SUS and verified that the specialty clinical genetics had the lower frequency in most part of the sample. The authors suggest that this may highlight the interference of the rule for obtaining the credential at SUS that does not require this specialty. Another referred hypothesis is that the characteristic of these centers is essentially rehabilitation interventions, and the role of the geneticist is mostly directed to diagnosis and counseling (MONLLEÓ; GIL-DA-SILVA-LOPES, 2006MONLLEO, I. L.; GIL-DA-SILVA-LOPES, V. L. Anomalias craniofaciais: descrição e avaliação das características gerais da atenção no Sistema Único de Saúde. Cad. Saúde Pública, Rio de Janeiro, v. 22, n. 5, p. 913-922, maio 2006.).

In the sub-dimension of care management the proposed relations comprise the following activities and respective results expected in the short/medium terms: the implementation of a system for monitoring by the team of the outcomes of treatment would guarantee the longitudinal follow-up of the patient (ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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) and a periodic assessment of the practices developed in the sphere of care would favor their improvement (CONTANDRIOPOULOS, 2006CONTANDRIOPOULOS, A. P. Avaliando a institucionalização da avaliação. Ciência & Saúde Coletiva, Rio de Janeiro, v. 11, n. 3, p. 705-711, set. 2006.); periodic meetings between team members would result in collective planning of interventions and debate of cases (ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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); the promotion of in-house training and support to continuing education (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.; ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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) would increase professional motivation and qualification. In the long term, these results would promote management excellence and maintenance of technical-scientific quality of the service.

In the same sub-dimension of care management, the articulation of patient referral to other services of SUS network would favor care integrality and continuity (BRASIL, 1990BRASIL. Lei nº 8.080, de 19 de setembro de 1990. Dispõe sobre as condições para a promoção, proteção e recuperação da saúde, a organização e o funcionamento dos serviços correspondentes e dá outras providências. Diário Oficial [da] União, Brasília, DF, 20 set. 1990. Disponível em: <http://www.planalto.gov.br/ccivil_03/Leis/L8080.htm>. Acesso em: 2 fev. 2017.
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); the evaluation of services users' perception and the promotion of spaces for health education would strengthen social participation, the autonomy of this segment, and the right to information, which are included in the Health Organic Law (Lei Orgânica da Saúde) (BRASIL, 1990BRASIL. Lei nº 8.080, de 19 de setembro de 1990. Dispõe sobre as condições para a promoção, proteção e recuperação da saúde, a organização e o funcionamento dos serviços correspondentes e dá outras providências. Diário Oficial [da] União, Brasília, DF, 20 set. 1990. Disponível em: <http://www.planalto.gov.br/ccivil_03/Leis/L8080.htm>. Acesso em: 2 fev. 2017.
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); and, finally, the coordination of active search for absent cases would reduce the number of non-attendance to programmed follow-up and treatment abandoning, besides contributing with greater social insertion of people with CLP (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.; TRINDADE; SILVA-FILHO, 2007TRINDADE, I. E. K.; SILVA-FILHO, O. G. (Org.). Fissuras labiopalatinas: uma abordagem interdisciplinar. São Paulo: Editora Santos, 2007.).

The rehabilitation dimension

The second part of the logic model comprises the attributions and responsibilities of the health team and professionals involved in the rehabilitation of cleft lip and palate. If nursing and plastic surgery perform the recommended activities there are greater changes that the corrective surgeries will be timely carried out, there may be a reduction in post-surgical intercurrences, and it will contribute to the maintenance of the surgeon's expertise (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.; ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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; SOUZA-FREITAS et al., 2012a______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 1: overall aspects. J. Appl. Oral Sci., Bauru, v. 20, n. 1, p. 9-15, 2012a.). The accomplishment of the roles of dentistry and its respective specialties will result in the reduction of the occurrence of oral pathologies throughout the rehabilitation and in the correction of maxillary-mandibular discrepancies (SOUZA-FREITAS ET AL., 2012B______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 2: Pediatric Dentistry and Orthodontics. J. Appl. Oral Sci., Bauru, v. 20, n. 2, p. 268-281, 2012b., 2012C______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 3: Oral and Maxillofacial Surgery. J. Appl. Oral Sci., Bauru, v. 20, n. 6, p. 673-679, 2012c., 2013______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 4: Oral Rehabilitation. J. Appl. Oral Sci., Bauru, v. 21, n. 3, p. 284-292, 2013.). If the actions of speech therapy and psychology are performed throughout the CLP rehabilitation process they will contribute to the conclusion of the interventions and the discharge of the patient from the respective therapeutic areas (WHO, 2002WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.; ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
http://www.acpa-cpf.org/uploads/site/Par...
; SOUZA-FREITAS ET AL., 2012A______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 1: overall aspects. J. Appl. Oral Sci., Bauru, v. 20, n. 1, p. 9-15, 2012a.). If social work promotes psychosocial rehabilitation of patient and family it favors the assiduity to consultations and treatments, and social and economic difficulties of patients will be mitigated (TRINDADE; SILVA-FILHO, 2007TRINDADE, I. E. K.; SILVA-FILHO, O. G. (Org.). Fissuras labiopalatinas: uma abordagem interdisciplinar. São Paulo: Editora Santos, 2007.). And finally, if otolaryngology and pediatrics provide the care pertaining to the respective specialties they will favor prevention and treatment of hearing impairments and child diseases associated with cleft lip and palate (ACPA, 2009AMERICAN CLEFT PALATE-CRANIOFACIAL ASSOCIATION (ACPA). Parameters: for evaluation and treatment of patients whit cleft lip/palate or other craniofacial anomalies. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf>. Acesso em: 20 nov. 2015.
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).

In the long term, the main result of all the dimensions and activities approached in the logic model designed is the patient's integral rehabilitation, which comprises surgical correction and speech rehabilitation - the two major CLP after-effects - and, furthermore, social inclusion and improvement of health and life conditions of the people involved.

As a graphic representation of how the care for the individual with CLP 'should be' (CASSIOLATO; GUERESI, 2010CASSIOLATO, M.; GUERESI, S. Como elaborar modelo lógico: roteiro para formular programas e organizar avaliação. Brasília, DF: Ipea, 2010.), the logic model does not therefore contemplate the complexity of factors involved in the patient's rehabilitation, among which those factors associated with the social determinants in health (BUSS; PELLEGRINI-FILHO, 2007BUSS, P. M.; PELLEGRINI-FILHO, A. A saúde e seus determinantes sociais. Physis, Rio de Janeiro, v. 17, n. 1, p. 77-93, abr. 2007.) and with the context of the implementation of actions. However, by explicating the hypotheses on how an intervention should supposedly operate, in various contexts, it creates the main reference on which management and assessment are based (CASSIOLATO; GUERESI, 2010CASSIOLATO, M.; GUERESI, S. Como elaborar modelo lógico: roteiro para formular programas e organizar avaliação. Brasília, DF: Ipea, 2010.). By providing information on how the activities may be connected with the expected results, the logic model appears as an efficient tool for supporting the management of intervention, resource allocation, and actions planning (HAYES; PARCHMAN; HOWARD, 2011HAYES, H.; PARCHMAN, M. L.; HOWARD, R. A logic model framework for evaluation and planning in a primary care practice-based research network (pbrn). Journal of the American Board of Family Medicine, Lexington, v. 24, n. 5, p. 576-82, 2011.). Considering the existing gap in the national administration sphere regarding assessing and monitoring SUS policy for the care of cleft lip and palate (BRASIL, 2015______. Ministério da Saúde. Secretaria de Atenção à Saúde. Relatório de Gestão 2014. Brasília, DF: Ministério da Saúde, 2015. Disponível em: <http://portalsaude.saude.gov.br/images/pdf/2016/marco/31/Relat--rio-de-Gest--o-da-SAS-2015-Final.pdf>. Acesso em: 2016.
http://portalsaude.saude.gov.br/images/p...
), the logic model may also offer support in identifying appropriate evaluation issues to be prioritized by managers (HARTZ; SILVA, 2005HARTZ, Z. M. A.; VIEIRA-DA-SILVA, L. M. (Org.). Avaliação em Saúde: dos modelos teóricos às práticas na avaliação de programas e sistemas de saúde. Salvador: Edufba; Rio de Janeiro: Fiocruz, 2005, 275 p.; CASSIOLATO; GUERESI, 2010CASSIOLATO, M.; GUERESI, S. Como elaborar modelo lógico: roteiro para formular programas e organizar avaliação. Brasília, DF: Ipea, 2010.).

Final considerations

The proposed modeling of care for individuals with CLP is a partial representation of a complex reality that makes evident several issues that deserve debate and investigation: Are the Brazilian centers linked to SUS complying with the guidelines systematized in this study? Which local context aspects are influencing the implementation of those services? To what extent are those centers capable of working on health prevention, considering the etiologic factors associated with tabagism, alcoholism, and nutritional deficiency? What happens to the cases that go through surgeries in hospitals and services that do not pertain to the reference network?

Conducting researches with evaluative approaches in the Brazilian states may contribute to the construction of answers on these and other gaps involving the care for individuals with CLP in SUS. The logic model designed also contributes to clarify to the Brazilian government what is expected from a care center for individuals with CLP, according to SUS principles, such as access universality and integrality. The formulation of indicators and assessment patterns constitutes the next stage to be achieved, based on the modeling proposed in this study.

  • Financial support: non-existent

References

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    » http://www.acpa-cpf.org/uploads/site/Parameters_Rev_2009.pdf
  • _______. Standards for Approval of Cleft Palate and Craniofacial Teams: Commission on Approval of Teams. Chapel Hill: ACPA, 2009. Disponível em: <http://www.acpa-cpf.org/uploads/site/Standards-2015.pdf>. Acesso em: 20 jun. 2015.
    » http://www.acpa-cpf.org/uploads/site/Standards-2015.pdf
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  • ______. Ministério da Saúde. Portaria SAS/MS nº 62, de 19 de abril de 1994. Normaliza cadastramento de hospitais que realizem procedimentos integrados para reabilitação estético-funcional dos portadores de má-formação lábio-palatal para o Sistema Único de Saúde. Diário Oficial [da] União, Brasília, DF, 20 abr. 1994. Disponível em: <http://sna.saude.gov.br/legisla/legisla/alta_lab_p/SAS_P62_94alta_lab_p.doc>. Acesso em: 17 jan. 2017.
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  • HAYES, H.; PARCHMAN, M. L.; HOWARD, R. A logic model framework for evaluation and planning in a primary care practice-based research network (pbrn). Journal of the American Board of Family Medicine, Lexington, v. 24, n. 5, p. 576-82, 2011.
  • HARTZ, Z. M. A.; VIEIRA-DA-SILVA, L. M. (Org.). Avaliação em Saúde: dos modelos teóricos às práticas na avaliação de programas e sistemas de saúde. Salvador: Edufba; Rio de Janeiro: Fiocruz, 2005, 275 p.
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  • ______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 1: overall aspects. J. Appl. Oral Sci., Bauru, v. 20, n. 1, p. 9-15, 2012a.
  • ______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 2: Pediatric Dentistry and Orthodontics. J. Appl. Oral Sci., Bauru, v. 20, n. 2, p. 268-281, 2012b.
  • ______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC-USP) - Part 3: Oral and Maxillofacial Surgery. J. Appl. Oral Sci., Bauru, v. 20, n. 6, p. 673-679, 2012c.
  • ______. Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 4: Oral Rehabilitation. J. Appl. Oral Sci., Bauru, v. 21, n. 3, p. 284-292, 2013.
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Publication Dates

  • Publication in this collection
    Mar 2017

History

  • Received
    Apr 2016
  • Accepted
    Oct 2016
Centro Brasileiro de Estudos de Saúde Av. Brasil, 4036, sala 802, 21040-361 Rio de Janeiro - RJ Brasil, Tel. 55 21-3882-9140, Fax.55 21-2260-3782 - Rio de Janeiro - RJ - Brazil
E-mail: revista@saudeemdebate.org.br