Dental care of disabled people: Descriptive cross-sectional study of social and medico-social establishments / Suivi bucco-dentaire des personnes handicapées : étude transversale descriptive en établissements sociaux et médico-sociaux

The first objective of this study, concerning the intervention of a dentist in social and medico-social establishments (SMSE), was to diagnose the oral care needs of disabled people (DP). The second objective was to raise awareness of a prevention and follow-up protocol among caregiving staff. We carried out this descriptive cross-sectional study from October 2016 to October 2018, in twenty SMSEs in Essonne. It involved a cohort of 663 volunteer DP, i.e., over 81 percent of the DP accommodated in these establishments. We analyzed DP's oral hygiene and health indicators, as well as changes in professional practices following simulation workshops, using Pearson's Chi-square test and Cramer's test to assess the existence of relationships between variables and their intensity, respectively. Of the 96 percent of DP who accepted a full screening, three-quarters had dental plaque and two-thirds had gingival inflammation, these pathologies being more frequent in the over-20s (p< 0.001 | Cramer's V=0.26). Only 14 percent had good oral health. Six months later, seventeen SMSEs had recorded dental check-ups in their medical records, and eight SMSEs had introduced brushing after dinner and breakfast, compared with ten and seven respectively before the intervention. This study confirmed the need for SMSEs to carry out dental screening. The involvement of establishments in monitoring the oral hygiene of DP must be strengthened.

Cette étude, menée dans le cadre de l'intervention d'un chirurgien-dentiste en établissements sociaux et médico-sociaux (ESMS), a eu comme premier objectif de poser un diagnostic sur les besoins en soins bucco-dentaires des personnes handicapées (PH). Le second objectif a été de parvenir à sensibiliser le personnel soignant à un protocole de prévention et de suivi. Cette étude transversale descriptive a été menée d'octobre 2016 à octobre 2018, auprès de 20 ESMS de l'Essonne et a concerné une cohorte de 663 PH volontaires, soit plus de 81 % des PH accueillies dans ces structures. Les indicateurs en hygiène et santé bucco-dentaire des PH, ainsi que l'évolution des pratiques professionnelles suite aux ateliers de mise en situation ont été analysés, via le test du Khi-deux de Pearson et celui de Cramer évaluant respectivement l'existence de relations entre variables et leur intensité. Parmi les 96 % des PH ayant accepté un dépistage complet, 3/4 présentaient de la plaque dentaire, 2/3 une inflammation gingivale, ces pathologies étant plus fréquentes chez les plus de 20 ans (p< 0.001 | V de Cramer= 0.26). Seuls 14 % avaient un bon état bucco-dentaire. Six mois après, 17 ESMS ont enregistré les suivis bucco-dentaires dans les dossiers médicaux et 8 ESMS instauré un brossage après le dîner et le petit déjeuner contre respectivement 10 et 7 avant l'intervention. Cette étude a conforté la nécessité de mener en ESMS des dépistages dentaires. L'implication des ESMS dans la surveillance de l'hygiène bucco-dentaire des PH reste à renforcer.

Special care in dentistry in France: Issues, current situation, outlook / Les soins spécifiques en odontologie en France : enjeux, état des lieux, perspectives

The question of oral health care and access to it for persons with disabilities is a key public health issue. This contribution describes the general landscape of access to oral health care for persons with disabilities since Law no.2005-102 of February 11, 2005, taking a broad approach that spans initial training and continuing education in the sector, the Romain Jacob charter, and the implementation of several networks. It also provides an analysis of the use of financial measures to incentivize the recognition of overtime spent providing care for persons with disabilities. The results of this study show that: considerable progress has been made in training; the missions of disability specialists must be redefined at the departmental level to enable these professionals to play their role; the enhanced financial recompense offered for this care is a step in the right direction but is insufficient to improve access to care for persons with disabilities; and, although care networks have proliferated, their future is uncertain given the precariousness of their funding. They remain, however, a system for providing care operating in parallel to mainstream care. While definite progress has been made over the past ten years, the Handifaction barometer shows that there is still much room for improvement as regards persons with disabilities' satisfaction with access to oral health care in France.

La question des soins buccodentaires et d'accès aux soins des personnes en situation de handicap est une question de santé publique primordiale. L'objectif est de décrire le paysage général de l'accès aux soins oraux des Personnes en situation de handicap depuis la loi du 11 février 2005. Un descriptif allant de la formation initiale à la formation continue en passant par l'engagement à appliquer la charte Romain Jacob et à la mise en place d'un certain nombre de réseaux est rapporté. Une analyse de l'utilisation des mesures pécuniaires incitatives à la prise en compte du temps supplémentaire de prise en soin des personnes handicapés est réalisé. Les résultats de ce descriptif montrent : Que de grands progrès ont été réalisés en matière de formation. Qu'une redéfinition des missions des référents handicap au niveau des ordres départementaux est nécessaire pour qu'ils puissent jouer leur rôle. Que la valorisation financière avec le supplément appliqué à la prise en charge est une avancée mais reste insuffisante pour améliorer l'accès aux soins des personnes en situation de handicap.Que les réseaux de soins se sont multipliés mais ont un avenir incertain compte tenu de la précarité de leur financement. Ils restent, cependant, un système de prise en charge parallèle à l'accès aux soins de droit commun. Si des progrès certains ont été constatés ces dix dernières années, le baromètre d'Handifaction reste très perfectible quant à la satisfaction des personnes en situation de handicap de l'accès aux soins buccodentaire sur le territoire.

An educational model for special patient care in dentistry.

Dental school graduates often have a basic knowledge in the management of patients with specialized healthcare needs. As of August 2019, CODA amended their accreditation standard 2-25: dental school graduates must be competent in the assessment and management of treatment of patients with specialized healthcare needs and disabilities. While the majority of these patients require modified dental care, many dental schools lack the facilities to provide both the proper care and education. This paper identifies improvements to dental education brought on by the innovations at Penn Dental Medicines' Personalized Care Suite for Persons with Disabilities (PCARE). Patient centered care is the emphasis of the PCARE curriculum. Although the clinic has special rooms and equipment to assist in accommodating the special needs of the patients, the program focuses on teaching dental students how to provide comfortable, safe, and effective care in a typical office setting. Detailed patient assessment, non-pharmacological management techniques, and treatment plans designed to meet the needs and abilities of the patients and caregivers are taught through lecture and direct patient care. Teaching assessment and management of this population is of great importance. Including treatment in Standard 2-25 creates another challenge to dental education. Penn Dental's facility allows multidisciplinary care in a cohesive and timely manner. The experience in PCARE offers unique opportunities to educate dental professionals in developing a patient centered approach in the treatment and maintenance of oral health in those patients who require accommodation.

OPERATIONALIZING ORAL HEALTH OUTCOME MEASURES TO IMPROVE THE ORAL HEALTH OF PERSONS WITH INTELLECTUAL DISABILITIES.

Individuals with intellectual disability (ID) face significant challenges in preventing oral diseases. They also lack access to high-quality oral health care in professional settings. To understand the effects of oral conditions on their lives and health, it is necessary to assess their oral health outcome measures. For those with mild ID, who possess adequate linguistic and cognitive abilities, accessibility features should be incorporated in the dental patient reported outcome (dPRO) measures. But many other individuals often lack the linguistic and cognitive ability to self-report through dPRO measures. While self-reported measures are preferable, requiring dPROs in this population would result in a high amount of missing data and the inability to assess interventions for improving their dental health. Thus, there is a need to use proxy-reported outcome (ProxRO) measures, observer reported outcome (ObsRO) measures, and clinician reported outcome (ClinRO) measures among those with ID. This is also a common approach taken by other specialties that work closely with those with ID, where the measures for activities of daily living and adaptive behavior measures use reporting by caregivers. ProxRO measures in dentistry that were created for infants and young children provide a structure for appropriate adaptations and the creation of relevant outcome measures. Including input from the intensely multidisciplinary teams that provide supports for those with ID is key to creating high-quality measures and oral health interventions for those with ID.

Access to dental care for children with special health care needs: a cross-sectional community survey within Jeddah, Saudi Arabia.

The aim of this study was to investigate the level of dental care access among children with special health care needs (CSHCN) in Jeddah, Saudi Arabia and the barriers hindering this access. Data of this cross-sectional study were obtained from self-administered surveys distributed through seven CSHCN centers. Children with autistic spectrum disorder (ASD), Down syndrome, cerebral palsy, and developmental delay were included. Univariate and bivariate analyses were conducted to describe the data. A total of 602 study participants were included in the analyses. Only 24.9% of the participated caregivers routinely visited the dentist for their CSHCN. Half of CSHCN caregivers found difficulties obtaining dental treatment. This trend was significantly greater in 12-18 years old children (p = 0.013) and in families commuting for more than one hour to dental clinics (p = 0.045). The most common reported barrier was fear of the dentist (61.6%) followed by child uncooperativeness (37.8%) and treatment costs (27.8%). CSHCN lack sufficient dental care for a variety of reasons, primarily fear of dentists, child uncooperativeness, and treatment costs. Dentists require more training and education to facilitate better access to dental care for CSHCN.

Are adults with autism receiving regular preventive dental services?

PURPOSE/AIM: To investigate the frequency of preventive dental care among adults with autism and explore factors associated with receiving regular preventive care. MATERIALS AND METHODS: De-identified data was collected from electronic health records of 18-year-old or older patients with autism that had at least one preventive dental procedure recorded. The data was then analyzed to describe the frequency of preventive dental procedures provided for this population and investigate what variables are associated with regular care. RESULTS: Sample size was 119, 67% were males, average age was 30.8 years, and 58% had Medicaid. Average BMI was 42.8, the prevalence of diabetes and heart disease were 16% and 34%, respectively, and 86% reported mental health problems. Recreational drug use was 6.8%, alcohol use was 19%, and tobacco use 16%. Xerostomia was reported by 32%, and the average number of medications was 7.2 ± 5.5. The average number of preventive dental visits was 7.9 ± 10.6, and 35% of the patients had at least one preventive dental visit per year. Only number of medications had a statistically significant association with number of preventive dental visits. CONCLUSIONS: Only one in every three adults with autism had at least one preventive dental visit per year.

Dental treatment under general anesthesia in patients with severe intellectual disability at the Gregorio Marañón General University Hospital: a 10-year retrospective study.

OBJECTIVES: There is a high demand for dental treatment in a hospital setting for patients with severe intellectual disability (ID), due to their inability to cooperate. The objective was to determine the types of dental treatment carried out on patients with severe ID, as well as the possibility of performing clinical and radiographic examinations prior to treatment and to identify their characteristics. METHOD AND MATERIALS: A retrospective observational study was performed, based on the medical histories of patients with severe ID or a disability included in the portfolio of dental services of Community of Madrid, who underwent dental treatment at the Stomatology Service of the Gregorio Marañón General University Hospital from the year 2009 to 2019. Data on age, sex, etiology of disability, and dental treatment were obtained. RESULTS: A total of 1,845 patients were included. The type of disability in the majority of cases was unknown, followed by encephalopathy, cerebral paralysis, and Down syndrome. In total, 8,439 dental extractions were performed on 1,548 patients (83.9%). Clinical and radiographic exploration were carried out on 874 patients (47.4%). CONCLUSIONS: Ultrasonic scaling was the most frequently performed treatment in patients. Dental extractions were the next most common treatment. An increase in age showed a higher demand for surgical procedures and extractions. Over half of the patients (52.6%) did not tolerate clinical or radiographic examinations.

Rede de cuidados à pessoa com deficiência: o direito à saúde bucal e a implementação da assistência odontológica especializada / Care network for persons with disabilities: the right to oral health and the implementation of specialized dental care

A implementação de políticas públicas depende das interrelações entre Estado, sociedade, política e economia, as quais produzem efeitos que irão repercutir na vida das pessoas. Na literatura, diferentes modelos teóricos estão disponíveis para estudo da implementação de políticas públicas. A relevância das necessidades de saúde da pessoa com deficiência cresceu, após a aprovação da Declaração dos Direitos das Pessoas com Deficiência (PcD), elevando a consciência sobre a necessidade da implementação de políticas públicas efetivas e duradouras de inclusão das PcD. Esta tese objetivou estudar o processo de implementação da Rede de Cuidados à Pessoa com Deficiência (RCPD) a partir do Modelo de Coalização de Defesa e da teoria da Burocracia do Nível de Rua; e descrever a extensão da integração sistêmica que orienta a conformação do cuidado da RCPD, no âmbito da saúde bucal, em seis regiões de saúde brasileiras, bem como produzir uma síntese de recomendações/expectativas sobre a assistência odontológica às PcD, adicionalmente. Para a viabilização dos resultados, foram utilizados dois métodos de pesquisa: o estudo de caso (único e múltiplo) e a revisão integrativa. Os resultados foram a elaboração de quatro artigos que tratam sobre: a descrição, sob o Modelo de Coalizão de Defesa, das condições que favoreceram a conformação do subsistema da política pública e o processo de implementação da RCPD em duas regiões de saúde brasileiras semelhantes (Artigo 1); a descrição da influência da discricionariedade dos profissionais e organizações da linha de frente na implementação de diferentes formas de acesso à assistência odontológica especializada na RCPD (Artigo 2); a produção de uma síntese da literatura científica sobre as expectativas/recomendações a respeito da assistência odontológica como direito à saúde bucal para pessoas com deficiência no âmbito internacional (Artigo 3); e a descrição da extensão da integração sistêmica da assistência odontológica na RCPD, em seis regiões de saúde brasileiras (Artigo 4). No contexto internacional, o direito à saúde bucal para PcD atravessa um cenário complexo e por vezes contraditório, afetado pelo modelo de proteção social dos países abordados pelos pesquisadores. No Brasil, os estudos de caso mostraram que a implementação da RCPD sofreu influência das crenças/convicções dos seus implementadores, bem como do poder discricionário deles. Além disso; a extensão da integração sistêmica foi influenciada pela indução federal, e pelas características do contexto loco-regional no processo de implementação da RCPD no âmbito da saúde bucal.

The implementation of public policies depends on the interrelationships between the State, society, policy and economy, which produce effects that will have repercussions on people's lives. In the literature, different theoretical models are available to study the implementation of public policies. The relevance of the health needs of people with disabilities grew after the approval of the Declaration of the Rights of People with Disabilities (PwD), raising awareness of the need to implement effective and lasting public policies for the inclusion of PwD. This thesis aimed to study the implementation process o f the Care Network for People with Disabilities (CNPD) based on the Defense Coalition Model and the Street Levei Bureaucracy theory; and describe the extent of systemic integration that guides the shaping of CNPD care, within the scope of oral health, in six brazilian health regions, as well as producing a synthesis of recommendations/expectations regarding dental care for PwD, in addition. To make the results viable, two research methods were used: the case study (single and multiple) and the integrative review. The results were the elaboration o f four articles that deal with: the description, under the Advocay Coalition Framework, o f the conditions that favored the conforrnation ofthe public policy subsystem and the process of implementing the CNPD in two similar Brazilian health regions (Article 1); the description ofthe influence ofthe discretion offrontline professionals and organizations in the implementation of different forms of access to specialized dental care in the CNPD (Article 2); the production of a synthesis of the scientific literature of expectations/recommendations regarding dental care as a right to oral health for people with disabilities at the international levei (Article 3); and the description of the extent of the systemic integration of dental care in the CNPD, in six Brazilian health regions (Article 4). At international context, the right to oral health for PwD has been crossed by a complex and sometimes contradictory scenario, affected by the social protection model o f the countries addressed by the researchers. In Brazil, the case studies showed that the implementation o f the CNPD was influenced by the beliefs/convictions of its implementers, as well as their discretion. Moreover, the extent of systemic integration was influenced by federal induction, in addition to characteristics o f the loco-regional context in the process of implementing the CNPD in the field of oral health.

Condição clínica e imunológica da cavidade bucal de crianças com síndrome congênita associada à infecção pelo vírus Zika / Clinical and immunologic condition of the oral cavity of children with congenital syndrome associated to Zika virus infection

O objetivo deste estudo foi comparar a condição bucal e parâmetros imunológicos de crianças com Síndrome Congênita associada à infecção pelo vírus Zika (SCZ), com microcefalia não associada à SCZ e normotípicas em um estudo transversal. Além disso, objetivou-se sintetizar, por meio de uma revisão sistemática da literatura, as alterações orais observadas em crianças com SCZ e comparar com crianças normotípicas. No artigo de revisão sistemática, buscas eletrônicas foram realizadas em cinco bases de dados, complementadas por escrutínio manual e pesquisas na literatura cinzenta. Os dados foram agrupados para análise quantitativa com intervalos de confiança de 95%. A qualidade metodológica dos estudos incluídos foi avaliada por meio das ferramentas de avaliação do Joanna Briggs Institute e a certeza da evidência, pela abordagem GRADE. Doze estudos observacionais foram incluídos. A prevalência bruta combinada mostrou 88% de aumento de salivação (IC 95%: 82%- 94%) e 52% de inserção anormal do freio labial superior (IC 95%: 43%-61%). Em comparação com controles normotípicos, crianças com SCZ tiveram maior chance de ter dificuldade de selamento labial (OR: 18,28; IC 95%: 1,42-235,91) e inadequada postura lingual em repouso (OR: 13,57; IC 95%: 4,24-43,44), com certeza muito baixa. Diversas alterações orais foram encontradas e as crianças com SCZ se mostraram mais propensas a desenvolver algumas delas, entretanto, entretanto, a certeza dessas evidências ainda é muito baixa. O estudo transversal foi desenvolvido com dois grupos de comparação, pareados por idade e sexo. Foram convidadas a participar da pesquisa mães e crianças com microcefalia, associada ou não à SCZ, e crianças normotípicas atendidas na Faculdade de Odontologia (FAO) da UFMG. Amostragem do tipo snowball foi utilizada para expandir a amostra inicial. Para a coleta de dados, as mães responderam a um questionário estruturado sobre informações sociodemográficas, história médica e odontológica das crianças. Também foi realizado um exame bucal para investigação das seguintes condições: experiência de cárie dentária, qualidade da higiene bucal, alterações de mucosa, presença de má oclusão, selamento labial, anomalias dentárias e defeitos de desenvolvimento de esmalte. A coleta de saliva para avaliação dos parâmetros imunológicos/inflamatórios da cavidade bucal das crianças foi realizada através do uso de um rolete de algodão. Os dados coletados foram armazenados e analisados pelo software Statistical Package for Social Science (SPSS®). Um total de 38 crianças (14 com SCZ, oito com microcefalia não associada à SCZ e 16 normotípicas) foram avaliadas. O sexo feminino foi o mais frequente (60,5%, n=23) e a média de idade entre eles foi de 4,9 (±1,4; 2-8) anos. Ausência de selamento labial e má oclusão foram os achados mais comuns nas crianças com SCZ, quando comparadas aos grupos controle. Em conjunto, os dados deste estudo contribuirão para a compreensão das condições bucais que crianças com SCZ possuem ou podem desenvolver, a fim de direcionar práticas clínicas e reforçar o incentivo aos cuidados de saúde bucal possibilitando uma melhora na qualidade de vida dessa população.

The objective of this study was to compare the oral condition and immunological parameters of children with congenital syndrome associated with Zika virus infection (CZS), with children with microcephaly non-CZS-associated and normotypic children in a cross-sectional study. In addition, it was intended to synthesize, through a systematic review of the literature, the oral alterations observed in children with CZS and compare with normotypic children. In the systematic review article, electronic searches were performed in five databases, complemented by manual scrutiny and research in gray literature. The data were grouped for quantitative analysis with 95%confidence intervals. The quality of the included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist tools, and the certainty of evidence was assessed using GRADE approach. Twelve observational studies were included. The pooled crude prevalence showed 88% of increased salivation (95%CI: 82%-94%), 52% of abnormal insertion of the upper labial frenum (95%CI: 43%-61%), and 50% of delayed tooth eruption (95%CI: 34%-66%). Compared to normotypic controls, children with CZS-associated microcephaly had a higher chance to have difficulty in lip sealing (OR: 18.28; 95%CI: 1.42-235.91), inadequate lingual posture at rest (OR: 13.57; 95%CI: 4.24-43.44), and delayed eruption (OR: 9.37; 95%CI: 2.03-43.21) with very low certainty. Several oral alterations were found and children with CZS-associated microcephaly were more likely to develop some of them, however, the certainty of this evidence is still very low. The cross-sectional study was carried out with two comparison groups, matched for age and sex. Mothers and children with microcephaly, associated or not with CZS, and normotypic children attended at the School of Dentistry of the UFMG were invited to participate in the research. Snowball sampling was used to expand the initial sample. For data collection, mothers responded to a structured questionnaire on sociodemographic information, medical and dental history of children. An oral examination was also performed to investigate the following conditions: experience of dental caries (dmft/DMFT), quality of oral hygiene (simplified oral hygiene index-SOHI), mucosa alterations, lip sealing, presence of malocclusion, dental anomalies and developmental defects of dental enamel (DDE). Saliva collection to evaluate the immunological/inflammatory parameters of the children's oral cavity was performed using a cotton roller. The collected data will be stored and analyzed using the Statistical Package for Social Science software (SPSS®). A total of 38 children (14 with CZS, eight with non-CZS-associated microcephaly and 16 normotypic) were evaluated. The female was the most frequent (60.5%, n=23) and the average age among them was 4.9 (±1.4; 2-8) years. Absence of lip sealing and malocclusion were the most common findings in children with SCZ when compared to control groups. Together, the data in this study will contribute to the understanding of the oral conditions that children with CZS have or can develop, in order to direct clinical practices and reinforce the incentive to oral health care enabling an improvement in the quality of life of this population.

Publication Trends Studies Involving Disabled Persons with Dental Care Needs: A 20-Year Bibliometric Analysis

ABSTRACT Objective: To evaluate scientific production on disabled persons with dental care needs over a 20-year period. Material and Methods: The search was conducted in the PubMed database using the MeSH terms "Disabled Persons" AND "Dentistry". Three researchers selected articles based on readings of the title, abstract and full text. The articles were categorized according to periodical, country, study design, subject and classification of comorbidities and associated disorders. Three hundred ninety-seven articles published in 140 periodicals were included. Results: The periodicals Special Care in Dentistry (54), Dental Clinics of North America (14) and British Dental Journal (14) accounted for 21% of the publications. The studies were conducted in 50 countries, with the United States accounting for 33%. More than half (52%) of the studies had a cross-sectional design. The main subject addressed was oral diagnosis and most of the comorbidities were generalized disabilities. Conclusion: Although a large number of the periodicals have contributed to knowledge building on disabled persons with dental care needs, the number of articles is small compared to other fields of dentistry. Moreover, important gaps in knowledge persist and projects with better methodological designs are needed to offer a more substantial contribution to clinical practice.

Perfil odontológico de pacientes brasileiros com doenças genéticas raras de envolvimento esquelético / Dental profile of brazilian patients with skeletal rare genetic disorders

Segundo a Organização Mundial de Saúde, uma doença é considerada rara quando acomete cerca de 65 pessoas a cada 100 mil indivíduos. No Brasil existem cerca de 13 milhões de pessoas diagnosticadas com alguma doença rara. O presente estudo objetivou comparar o perfil odontológico de pacientes brasileiros com doenças genéticas raras de envolvimento esquelético com brasileiros normotípicos. O estudo foi realizado a partir de um banco de dados cujas informações foram coletadas em 2019. Foi desenvolvido um estudo transversal, com uma amostra de conveniência (amostragem do tipo snowball) de 105 indivíduos com doenças genéticas raras ([MPS (n=27) / OI (n=78)], na faixa etária de dois a 54 anos e os pais/responsáveis, e 105 indivíduos sem doenças genéticas raras. A amostra foi selecionada em ambulatórios médicos de serviços especializados/referência em doenças raras, de cinco estados brasileiros (Ceará, Espírito Santo, Minas Gerais, Rio de Janeiro e São Paulo). Os pais/responsáveis responderam um questionário sobre aspectos individuais (sexo, idade, cor da pele e renda familiar) e perfil odontológico dos participantes. O perfil odontológico foi identificado a partir de questões relacionadas à história odontológica do participante [experiência odontológica, dor dentária (últimos 12 meses), tempo e motivo da última consulta odontológica, uso do SUS para assistência odontológica, satisfação sobre a assistência recebida na última consulta odontológica, dificuldades para o filho receber assistência odontológica] e presença/ausência de problemas dentários. O estudo foi aprovado pelo Comitê de Ética em Pesquisa da Universidade Federal de Minas Gerais, (CAAE 01480212.4.0000.5149 [MPS] / CAAE 54755516.4.0000.5149 [OI]. Foram realizadas as análises univariada, bivariada e multivariada [Regressão logística binária não-ajustada e ajustada (Odds Ratio, método Conditional Backward, IC 95%)]. A média de idade dos indivíduos com doença rara foi de 14,1 anos (±12,2) e mediana 9,5 anos. A maioria era do sexo feminino (53,8%), cor da pele não branca (56,7%) e renda familiar superior a um salário mínimo (82,4%). Entre os indivíduos com doenças raras, 78 tinham OI (37,1%) e 27 com MPS (12,9%). A maior parte era do estado de Minas Gerais (46,7%). Pacientes que já utilizaram os serviços odontológicos do SUS apresentaram uma chance 2,24 maior de pertencer ao grupo de pacientes com doenças raras (OR= 2,24; IC 95%: 1,07- 4,89). Os participantes com histórico de dificuldades para receber tratamento odontológico apresentaram 14,86 vezes maior chance de serem pacientes com doenças raras (OR=14,86; IC 95%: 5,96-27,03). E, os participantes diagnosticados com algum problema bucal apresentaram 10,38 vezes mais chances de pertencerem ao grupo com doenças raras (OR=10,38; IC 95%: 1,95-35,17). Pacientes com doenças raras apresentaram maior histórico de dificuldade em conseguir acesso a tratamento odontológico e de fazer uso do sistema público de saúde/SUS e foram diagnosticados com mais problemas dentários comparados aos indivíduos normotípicos.

According to the World Health Organization, a disease is considered rare when it affects about 65 people per 100,000 individuals. Brazil has about 13 million people affected by rare diseases. The aim of the present study was to compare the dental profile of Brazilian patients with skeletal rare genetic disorders and normotypical Brazilian patients. The study was carried out from a database with information collected in 2019. A cross-sectional study was carried out with 105 individuals with rare genetic diseases ([MPS (n=27) / OI (n=78)], with two to 54 years old and their parents/guardians. 105 normotypical individuals were also recruited for the study (Snowball sampling). The sample was selected in outpatient clinics that are reference in the care of rare diseases, in five Brazilian states (Ceará, Espírito Santo, Minas Gerais, Rio de Janeiro and São Paulo). Parents/guardians answered a questionnaire about individual aspects of their child (gender, age, skin color and level of education of parents/guardians).The dental profile was identified from questions related to dental history [(patient's dental experience, presence of dental pain (last 12 months), when was the last dental visit and the reason for it, use of Unified Health System (SUS) dental care services, satisfaction with the care received at the last dental appointment, difficulties for the child to receive dental treatment)] and presence/absence of dental problems. The study received approval from the Research Ethics Committee of Federal University of Minas Gerais (CAAE 01480212.4.0000.5149 [MPS] / CAAE 54755516.4.0000.5149 [OI]. A descriptive analysis and non-adjusted and adjusted binary logistic regression models was performed (Odds Ratio, Conditional Backward method, 95%CI). The results showed that the average age of individuals with a rare disease was 14.1 years (±12.2) and median age of 9.5 years. Most of them were female (53.8%), non-white skin color (56.7%) and with a family income higher than one minimum wage (82.4%). Among individuals with rare diseases, 78 (37.1) were with OI and 27 (12.9) with MPS. Most of the sample were from Minas Gerais state, Brazil, [98(46.7)]. Participants who had already used SUS dental care services had a 2.24 times higher chance of belonging to the group with rare diseases (OR= 2.24;95% CI: 1.07-4.89). Patients with a history of difficulties to receive dental treatment were 14.86 times more likely to belong to the group with rare diseases (OR=14.86; 95% CI: 5.96- 27.03). Patients diagnosed with 1 or more dental problems were 10.38 times more likely to belong to the group with rare diseases (OR=10.38; 95% CI: 1.95-35.17). Individuals with rare diseases have a greater history of difficulty in accessing dental treatment, use the public health system/SUS, and were diagnosed with more dental problems compared to normotypical Brazilian patients.

Análise do perfil facial e da má oclusão de crianças e adolescentes com doenças genéticas raras que afetam o desenvolvimento esquelético / Analysis of malocclusion and facial profile of children and adolescents with rare genetic diseases that affect skeletal development

As doenças raras são definidas pelo Ministério da Saúde do Brasil como aquelas que afetam até 65 pessoas por 100.000 pessoas. No Brasil, estima-se que existam entre 13 a15 milhões de pessoas afetadas aproximadamente. Dentro desse grupo de enfermidades raras estão aquelas de etiologia genética cujo desenvolvimento esquelético é afetado; como as mucopolissacaridoses (MPS) e a osteogênese imperfeita (OI); as quais estão associadas à diversas alterações orofaciais. O objetivo deste estudo foi comparar a prevalência de má oclusão e o perfil facial de crianças e adolescentes com doenças genéticas raras que afetam o desenvolvimento esquelético com crianças e adolescentes normotípicos. Foi realizado um estudo observacional transversal com 152 crianças e adolescentes, sendo 76 com doenças genéticas raras ([MPS (n=19) / OI (n=57)], e 76 sem doença genética rara; na faixa etária de dois a 19 anos e os pais/responsáveis. Os grupos foram pareados por idade e sexo. As crianças/adolescentes com doenças raras foram recrutadas em ambulatórios médicos de serviços de referência em doenças genéticas raras, de cinco estados brasileiros (Ceará, Espírito Santo, Minas Gerais, Rio de Janeiro e São Paulo). O grupo sem doença rara foi recrutado em outros ambulatórios dos mesmos hospitais. Foi realizado o exame bucal das crianças/adolescentes (presença de má oclusão) e a análise subjetiva do perfil facial (simetria facial, proporção facial, altura facial anteroinferior, perfil facial, convexidade facial, ângulo nasolabial, selamento labial, linha mento-pescoço). Os pais/responsáveis responderam um questionário sobre questões individuais, sociodemográficas, comportamentais e história médica e odontológica do filho. O Directed Acyclic Graph (DAG) foi utilizado para identificar possíveis variáveis de confusão. O estudo foi aprovado pelo Comitê de Ética em Pesquisa (CEP) da Universidade Federal de Minas Gerais (CAAE 01480212.4.0000.5149 [MPS] e CAAE 54755516.4.0000.5149 [OI]). Foi realizada a análise univariada da frequencia de alterações faciais e de má oclusão em ambos os grupos. A média de idade das crianças/adolescentes foi de 8,9 anos (±4,6). Não houve variáveis de confusão para a associação entre doenças raras e questões oclusais. Quando comparada ao grupo sem doença rara, verificou-se que a amostra de participantes com doenças raras foi identificada com maior prevalência de má oclusão (apinhamento, giroversão, alterações de overjet/overbite, mordida cruzada e/ou aberta e má oclusão de classe III). O grupo com doenças raras apresentou maior tendência com percentual maior de alterações faciais (dolicofacial, perfil convexo/côncavo, proporção/altura facial inadequadas, ângulo nasolabial aberto/fechado, ausência de selamento labial, interposição de língua e linha queixo-pescoço inadequada) do que o grupo de comparação. Pôde-se concluir que as crianças e adolescentes com doenças genéticas raras que afetam o desenvolvimento esquelético apresentaram prevalência maior de má oclusão e de alterações faciais, quando comparados às crianças/adolescentes sem doenças raras.

Rare diseases are defined as those that affect up to 65 people per 100,000 people. In Brazil, it is estimated that there are between 13 and 15 million people with rare diseases. In this group of diseases are those of genetic etiology that affect skeletal development; such as Mucopolysaccharidoses (MPS) and Osteogenesis Imperfecta (OI). They are two diseases associated with several orofacial alterations. The aim of this study was to compare the prevalence of malocclusion and the facial profile of children and adolescents with rare genetic diseases that affect skeletal development with normotypical children and adolescents. A cross-sectional observational study was carried out with 152 children and adolescents, 76 with rare genetic diseases ([MPS (n=19) / OI (n=57)], and 76 without rare genetic diseases; aged between two and 19 years and parents/guardians. The groups were matched by age and gender. Children/adolescents with rare diseases were recruited from outpatient clinics of specialized or reference services in rare genetic diseases, in five Brazilian states (Ceará, Espírito Santo, Minas Gerais, Rio de Janeiro and São Paulo). The group without a rare disease was recruited from other clinics in the same hospitals. A clinical examination of the malocclusion of the children/adolescents and an analysis of the facial profile were performed (facial symmetry, facial proportion, anteroinferior facial height, facial profile, facial convexity, nasolabial angle, lip sealing, chin-neck line). Parents/guardians answered a questionnaire about individual, sociodemographic, behavioral questions and the child's medical and dental history. The Directed Acyclic Graph (DAG) was used to identify possible confounding variables. The study was approved by the Research Ethics Committee (CEP) of the Federal University of Minas Gerais (CAAE 01480212.4.0000.5149 [MPS] / CAAE 54755516.4.0000.5149 [OI]). Univariate analysis of the frequency of facial alterations and malocclusion was performed in both groups. The average age of children/adolescents was 8.9 years (± 4.6). There were no confusion variables for the association between rare diseases and occlusal issues. When compared to the group without a rare disease, it was found that the sample of participants with rare diseases was identified with a higher prevalence of malocclusion (dental crowding, rotation, overjet/overbite changes, crossbite and/or open bite). The group with rare diseases was also diagnosed with a higher percentage of facial alterations (dolichofacial, convex/concave profile, inadequate facial proportion/height, open/closed nasolabial angle, absence of lip seal, tongue interposition and inadequate chin-neck line) when compared to the normotypic group. It could be concluded that children and adolescents with rare genetic diseases that affect skeletal development had a higher prevalence of malocclusion and facial alterations, when compared to children/adolescents without rare diseases.

Perfil epidemiológico dos pacientes com necessidades especiais em Sergipe / Epidemiological profile of patients with special needs in Sergipe

Introdução:No Brasil, em 2010, aproximadamente 24% da população apresentava algum tipo de deficiência e 25% da população no estado de Sergipe. Devido a tal demanda, em 2004, foi criada a Política Nacional de Saúde Bucal que, entre outras, foi instituída o atendimento em nível secundário em saúde para as Pessoas com Deficiência (PD). Objetivo:Verificar o perfil das PD atendidas no Centro de Especialidades Odontológicos (CEO) de São Cristóvão/SE e os procedimentos odontológicos mais realizados. Materiais e métodos:Para tal, foram analisados os prontuários dos PD atendidos no período de janeiro de 2019 até setembro de 2022. Resultados:Foi verificado que houve atendimento em 2019 de 101 pacientes, 2020 de 71 pacientes, 2021 em 33 pacientes e, em 2022, 87 pacientes. Acidade de origem dos PD é em 68,7 % do município sede do CEO (São Cristóvão). Sobre o diagnóstico dos pacientes, os mais prevalecentes foram autismo (10%), seguido de síndrome de Down (4%) e paralisia cerebral (4%). Do total de procedimentos realizados, 160 ATF (Aplicação Tópica de Flúor), seguido por 148 profilaxias, 116 adequações do meio bucal, 138 exodontias, 98 restaurações com resina, 58 restaurações com amálgama, 111 atendimentos de periodontia (raspagem e alisamento radicular) e 45 orientações de higiene oral. Conclusões: Diante dos dados, observou-se que o CEO de São Cristóvão se comporta com predomínio de atendimentos de seus munícipes e ainda há alta prevalência de atendimento de exodontias.

Dental care for patients with special needs at a private higher education institute / Atendimento odontológico a pacientes com necessidades especiais em uma instituição privada de ensino superior

Objetivo: Pacientes com necessidades especiais são aqueles indivíduos que necessitam de cuidados especiais por tempo indeterminado ou por toda a vida. O presente estudo tem como objetivo abordar o atendimento odontológico de pacientes com necessidades especiais em uma instituição privada de ensino superior da cidade de São Paulo. Material e Métodos: Foi realizado um estudo descritivo, retrospectivo, para análise de 210 prontuários odontológicos de pacientes com necessidades especiais atendidos no Departamento de Odontologia para Pacientes Especiais da Universidade Cruzeiro do Sul entre 2012 e 2018. Dados sobre sexo, idade, diagnóstico da condição debilitante, motivo da consulta, uso continuado de medicamentos, imagens radiográficas e tratamentos odontológicos prestados foram todos coletados e posteriormente submetidos à análise estatística descritiva e inferencial (teste do qui-quadrado) ao nível de significância de 5%. Resultados: Quanto aos tipos de procedimentos odontológicos avaliados no presente estudo, dos 210 pacientes, 24% necessitaram de tratamentos curativos dentários em que a terapia periodontal foi o tipo mais prevalente, enquanto os tratamentos endodônticos tiveram a menor prevalência, representando apenas 4%. Houve alta prevalência de doenças crônicas sistêmicas, acometendo 56% dos casos, cuja faixa etária era superior a 40 anos. Conclusão: Check-ups odontológicos regulares devem ser priorizados em pacientes com necessidades especiais para evitar intervenções mais invasivas como em nosso grupo (AU)

Objective: Patients with special needs are those individuals who need special care for an undetermined period of time or for lifetime. The present study is aimed to address the dental care of special needs patients at a private higher education institute in the city of São Paulo. Material and Methods: A descriptive, retrospective study was performed for analysis of 210 dental records of special needs patients who were treated at the Dental Department for Special Patients of the Cruzeiro do Sul University between 2012 and 2018. Data on gender, age, diagnosis of the debilitating condition, reason of the consultation, continued use of medications, radiographic images and dental treatments provided were all collected before being submitted to descriptive and inferential statistical analysis (chi-square test) at a significance level of 5%. Results: As for the types of dental procedures assessed in the present study, of the 210 patients, 24% needed dental curative treatments in which periodontal therapy was the most prevalent type, whereas endodontic treatments had the lowest prevalence, representing 4% only. There was a high prevalence of chronic systemic diseases, affecting 56% of the dental records, whose age group was above 40 years old. Conclusion: Regular dental check-ups should be prioritized in patients with special needs to avoid more invasive interventions as found in our group (AU)

Protocol proposal for early dental care in infants with cerebral palsy

Introduction: Children with cerebral palsy (CP) are at high risk of developing oral diseases. Objective: To propose an early dental care protocol for infants with CP. Materials and Methods: A computerized systematic search was performed in the PubMed, Scopus and Embase electronic databases for relevant articles. An early dental care protocol was then proposed for infants with cerebral palsy focused on comprehensive care with a multidisciplinary approach and effective health promotion by caregivers. Results: Fifteen published papers were included in the present literature review and protocol proposal. The protocol comprised the following topics: First dental visit, aspects related to the appointment, oral hygiene recommendations, dietary recommendations and recommendations for the prevention and control of harmful oral habits. The first dental visit should occur prior to the eruption of the teeth. As a special group, it is important to determine the affective bond between the patient and caregiver who will receive the oral health care recommendations. During the clinical examination, the correct positioning and stabilization of the infant is important for the control of involuntary movements and the minimization of swallowing difficulties. Counseling with regards to adequate oral hygiene, a healthy diet and the prevention of harmful oral habits is important to the prevention of dental diseases. Children with oral-motor motility problems and feeding difficulties should be referred to therapeutic follow-up. Due to the neuropsychomotor disorders often found in cerebral palsy, affected children are more vulnerable to oral diseases. Thus, oral health care must be performed as early as possible by the parents/caregivers of these children. Conclusion: Individuals with cerebral palsy are at greater risk of developing oral problems. Thus, oral health programs starting in early childhood and targeting the specificities of these individuals is a strategy for minimizing the occurrence of such problems and the associated burden.

Introdução: Crianças com Paralisia Cerebral (PC) apresentam um alto risco para o desenvolvimento de doenças bucais. Objetivo: Propor um protocolo de atendimento odontológico precoce para lactentes com PC. Materiais e Métodos: Foi realizada uma busca computadorizada sistemática nas bases de dados eletrônicas PubMed, Scopus e Embase. Também foi desenvolvida uma proposta de protocolo de atendimento a bebês com Paralisia Cerebral com foco no cuidado integral, abordagem transdisciplinar e promoção efetiva da saúde pelos cuidadores. Resultados: Foram incluídos 15 artigos publicados na literatura científica. O protocolo desenvolvido é composto pelos seguintes tópicos: Primeira consulta odontológica, tempo ideal da consulta, recomendações de higiene bucal, recomendações sobre dieta e recomendações sobre prevenção e controle dos hábitos bucais. A primeira visita ao dentista deve ser feita antes da erupção do primeiro dente. Como um grupo especial, é importante determinar o vínculo afetivo entre o paciente e o cuidador que receberá as recomendações de cuidados com a saúde bucal. Durante o exame clínico, a correta posição e estabilização do bebê na cadeira odontológica é importante para controlar os movimentos involuntários e reduzir a dificuldade de deglutição. Recomendações quanto à higiene bucal adequada, alimentação saudável e prevenção de hábitos bucais deletérios são importantes para prevenir o desenvolvimento de doenças bucais. Crianças com problemas de motilidade oral-motora e dificuldades de alimentação devem ser encaminhadas para acompanhamento terapêutico. Devido à presença de distúrbios neuropsicomotores normalmente presentes na Paralisia Cerebral, as crianças afetadas são mais vulneráveis às doenças bucais. Assim, os cuidados com a saúde bucal devem ser realizados o quanto antes pelos pais/responsáveis. Conclusão: Indivíduos com PC apresentam maior risco de desenvolver doenças bucais e programas de saúde bucal iniciados na primeira infância e direcionados às suas especificidades podem ser uma estratégia para minimizar as consequências que possam vir a acontecer.

Guidelines for Medical Immobilization/Protective Stabilization for Your Practice.

Many patients with special healthcare needs present to medical, dental, and other health visits with behavioral, emotional, postural, and psychological issues. According to the American Academy of Developmental Medicine and Dentistry (AADMD) guidelines from 2017: "Clinical dental treatment is the most exacting and demanding medical procedure that persons with special needs undergo on a regular basis throughout their lifetime." Moreover, dental treatment is basically surgical in nature, usually requiring controlled placement of sharpened instruments in intimate proximity to the face, airway, and highly vascularized and innervated oral tissues. When medically necessary healthcare must be provided and the patient's inability to accept or cooperate will compromise the quality of care the clinician will be able to deliver, interventions may be indicated and implemented.

Impact of disability diagnosis on dental care use for adults in the United States: Status matters.

BACKGROUND: Approximately 25% of adults in the United States have a disability that limits function and independence. Oral health care represents the most unmet health care need. This population has been found to have decreased oral health outcomes compared with the general population. METHODS: The authors used the 2018 adult National Health Interview Survey to assess the association between disability status and dental care use (dental visit within or > 2 years). Disability status was categorized as adults with an intellectual, acquired, or developmental disability (IADD) that limits function, other disability that limits function, or no disability, on the basis of diagnoses of birth defect, developmental diagnosis, intellectual disability, stroke, senility, depression, anxiety, or emotional problem, all causing problems with function. RESULTS: Adults with an IADD with functional and independence-limiting disabilities experienced higher crude odds of going 2 years or more without a dental visit than adults without disabilities (odds ratio [OR], 2.29; 95% CI, 1.96 to 2.67). This association was part of a significant interaction and was stronger among those with IADDs who could afford oral health care (OR, 1.73; 95% CI, 1.47 to 2.14) than among those who could not afford oral health care (OR, 1.21; 95% CI, 0.88 to 1.67; P value of interaction <.01). CONCLUSIONS: Adults with IADDs have decreased access to oral health care compared with adults with other disabilities or without disabilities. The inability to afford oral health care lessens the impact of disability status. PRACTICAL IMPLICATIONS: Dentists can use this study to understand the implications of IADD diagnoses on dental care use and make efforts to facilitate care for these patients.