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

Almeida, Ana Maria Freire de Lima; Chaves, Sônia Cristina Lima; Santos, Carla Maria Lima; Santana, Sisse Figueredo de

doi:10.1590/0103-11042017S12

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ORIGINAL ARTICLE • Saúde debate 41 (spe) • Mar 2017 • https://doi.org/10.1590/0103-11042017S12 copy

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

Authorship SCIMAGO INSTITUTIONS RANKINGS

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

WHO (2002)WORLD HEALTH ORGANIZATION (WHO). Global strategies to reduce the health: care burden of craniofacial anomalies. Geneva: WHO, 2002.	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. http://www.acpa-cpf.org/uploads/site/Sta...
Part 1: Health care	1. Team composition
Neonatal emotional support and professional counseling; Neonatal nursing; Surgery: team agreed protocol; Orthodontics; Speech therapy; Otolaryngology; Clinical genetics/Pediatrics; Emotional support and professional counseling for patient and family; Periodical dental care; National register.	Presence of one coordinator; Minimum team with speech therapy, surgery and orthodontic specialties; Access to professionals in the areas of psychology, social work, audiology, general and pediatric dentistry, otolaryngology, pediatrics and nursing; The craniofacial team should include a surgeon trained in craniofacial surgery and access to a psychologist for the evaluation of cognitive and neurological development; The team should facilitate access to a neurosurgeon, an ophthalmologist, a radiologist and a geneticist.
Part 2: Service organization	2. Team management and responsibilities
Multidisciplinary team of specialists; Team members should have specific training and experience with cleft care; Team should agree upon the phases of treatment, including analysis, register collection and general protocols; There should be one person responsible for the improvement of quality and communication within the team; The coordination of patient’s care is important; The number of patients referred to the team should be sufficient to sustain the experience and specialized competences of all team members, and to allow evaluation/team performance audit within a reasonable time period. It has been recommended that surgeons, dentists and speech therapists should treat at least 40-50 new cases per year.	Periodical meetings of team members; Mechanism of referral and communication with other professionals; Subsequent evaluations of patients at periodical intervals, based on team recommendations; Central registries shared by the team.
	3. Communication with patient and family
	The team should provide adequate information to family/caregiver on the evaluation and treatment procedures; The team should stimulate the participation of patient and family/caregiver in the treatment process; The team should support families/caregivers in obtaining the necessary financial resources to meet the demands of each patient.
Part 3: Funding	4. Cultural competence
Resources should be available to cover the following care aspects: Neonatal emotional support and professional counseling; Neonatal nursing; Surgery; Orthodontics/Orthopedics; Speech evaluation and therapy; Otolaryngology treatment; Clinical genetics/Pediatric medicine; Emotional support for child and parents; Travel expenses; General dental care, including prostheses.	The team demonstrates sensibility for the individual differences that affect the relationship between its dynamics and that of the patient and the family/caregiver; The team treats patients and families/caregivers in a non-biased manner.
	5. Social and psychological services
	The team has a mechanism to evaluate and treat, initially and periodically, if needed, the psychological and social needs of patients and families/caregivers, and submit them to posterior treatment, if necessary; The team has a mechanism to evaluate the cognitive development.
	6. Evaluation of results
	The team uses a process to evaluate its own performance, regarding the evaluation of the patient, treatment, or satisfaction, and a program of improvements based on the results of these evaluations; The team registers its treatment results, including the performance and changes throughout time; The team should also have a quality management system to evaluate the satisfaction of the patient/family.

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E-mail: revista@saudeemdebate.org.br

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[1] Conflict of interests: non-existent