Dental Profile of Brazilian Patients with Rare Skeletal Genetic Disorders: Clinical Features and Associated Factors.

The aim of this study is to compare the dental profiles of Brazilian patients with rare genetic skeletal disorders and normotypical patients. A cross-sectional study was carried out with 210 individuals aged between 2 and 54 years old [105 with rare diseases (Mucopolysaccharidosis/MPS n = 27 and Osteogenesis Imperfecta/OI n = 78) and 105 without rare diseases] and their parents/caregivers. The parents/caregivers answered a questionnaire about individual aspects of their child and the dental profile was identified from questions related to dental history and the presence/absence of dental problems. The patients' oral cavity was also examined by three examiners for dental caries, malocclusion, gingivitis, and dental anomalies. The average age of individuals with a rare disease was 14.1 years (±12.2) and the median was 9.5 years. Participants who had already used the public health system (SUS) dental care services had a 2.24 times higher chance of belonging to the group with a rare disease (OR = 2.24; 95% CI: 1.07-4.89). Patients with rare diseases are 14.86 times more likely to have difficulty receiving dental treatment (OR = 14.86; 95% CI: 5.96-27.03) and 10.38 times more likely to have one or more dental problems (OR = 10.38; 95% CI: 1.95-35.17). Individuals with rare disorders have a greater history of difficulty in accessing dental treatment, using the SUS, and were diagnosed with more dental problems compared to normotypical individuals.

Impacto do isolamento social durante a pandemia da COVID-19 na vida das mães e crianças com Transtorno do Espectro Autista: um estudo qualitativo / Impact of social isolation during the COVID-19 pandemic on the lives of mothers and their children with Autism Spectrum Disorder: a qualitative study

A pandemia da COVID-19 modificou a rotina e interrompeu a normalidade do funcionamento diário das famílias em todo o mundo. Essas mudanças apresentaram consequências intensas para as famílias de crianças com Transtorno do Espectro Autista (TEA), que sofreram muito impacto com a suspensão das terapias de suporte e das aulas presenciais. Este estudo objetivou analisar o impacto do isolamento social durante a pandemia da COVID-19 para crianças com TEA, bem como na saúde mental das mães dessas crianças. Foi realizada uma pesquisa qualitativa com mães de filhos com TEA, entre seis e 12 anos de idade, atendidos na Faculdade de Odontologia da Universidade Federal de Minas Gerais (UFMG), em Belo Horizonte, região sudeste do Brasil. Foi realizada entrevista individual, direcionada por um roteiro semiestruturado. As participantes foram entrevistadas entre maio e agosto de 2021. Considerando a necessidade de isolamento social naquele momento da pandemia, as entrevistas com as mães foram conduzidas de forma online, pelo aplicativo WhatsApp®. As entrevistas foram registradas mediante a gravação de áudio. Todas as falas foram transcritas de forma literal. As falas foram analisadas por meio da análise de conteúdo, com quatro núcleos temáticos: pandemia da COVID-19, saúde geral da criança, saúde bucal da criança e saúde mental da mãe. Previamente ao estudo principal, foi realizado o estudo piloto com cinco participantes. Não houve necessidade de nenhuma alteração no instrumento nem na logística da pesquisa de campo. O estudo foi aprovado pelo Comitê de Ética em Pesquisa da UFMG (CAAE: 46953521.4.0000.5149 / Parecer: 4.807.252). O tempo médio de duração das entrevistas foi de 55 minutos. A pesquisa contou com a participação de 15 mães de crianças com TEA. Em um primeiro momento, serão apresentados os dados analisados no artigo 1, que objetivou analisar a percepção de um grupo de mães sobre o impacto do isolamento social durante a pandemia da COVID-19 na vida de crianças com TEA. As entrevistadas relataram dificuldades para as crianças seguirem as medidas de segurança contra a doença (como o uso de máscara, higienização das mãos, hábito de colocar objetos na boca) e problemas com a suspensão das aulas presenciais e dos tratamentos de rotina (psicoterapias, fonoaudiologia), que fazem parte da reabilitação da maioria das crianças com TEA. De forma geral, para as entrevistadas, houve uma regressão no processo de socialização e desenvolvimento dos filhos. Algumas crianças ficaram mais agressivas e ansiosas, influenciando na rotina de toda a família. Houve piora dos hábitos alimentares e de higiene bucal. As mães sinalizaram dificuldades ainda maiores para conseguirem atendimento odontológico para o filho. Foi frequente as mães mencionarem sentimentos de estresse, insegurança e medo relacionados às dificuldades do filho com TEA para cumprir as medidas de segurança contra a COVID-19 e conseguir acompanhar as aulas online. Com a suspensão dos tratamentos reabilitadores das crianças, as mães precisaram desenvolver, em casa, habilidades para realizarem algumas atividades relacionadas aos tratamentos terapêuticos que os filhos realizavam previamente à pandemia. Além disso, muitas mães passaram a auxiliar as crianças, lado a lado, durante as aulas online. Houve uma sobrecarga de trabalho para as mães. A partir desse estudo, concluiu-se que a pandemia provocou um impacto grande na vida das crianças com TEA e das mães destas. O comprometimento das atividades educacionais e terapêuticas sinalizaram prejuízos significativos no desenvolvimento das crianças, repercutindo negativamente na saúde geral e bucal.

The COVID-19 pandemic has changed the daily routine of families around the world. These changes had intense consequences for families of children with Autism Spectrum Disorder (ASD), who suffered a significant impact with the suspension of supportive therapies and presential classes. This study aimed to analyze the impact of social isolation during the COVID-19 pandemic for children with ASD and on the mental mental health of the mothers of these children. Qualitative research was carried out with mothers of children with ASD, aged between six and 12 years, attended at a dental school of a public university in the state of Minas Gerais, southeastern region of Brazil. An individual interview was used, guided by a semi-structured script. The participants were interviewed between May and August 2021. Considering the need for social isolation at that time of the pandemic, the interviews were conducted remotely through the WhatsApp® application. The interviews were recorded and all speeches were transcribed literally. The speeches were scrutinized through content analysis, with four thematic cores: COVID-19 pandemic, general child health, child's oral health and mother's mental health. Prior to the main study, a pilot study was carried out with five participants. There was no need for any changes to the instrument or the field research logistics. The study was approved by the Research Ethics Committee at UFMG (CAAE: 46953521.4.0000.5149 / Project approval number: 4,807,252). The average duration of the interviews was 55 minutes. The research had the participation of 15 mothers of children with ASD. At first, the data analyzed in article 1 will be presented, which analyzed the perception of a group of mothers about the impact of social isolation during the COVID-19 pandemic on the lives of children with ASD. The interviewees reported difficulties for the children to follow the safety measures to prevent the disease (such as the use of a mask, hand hygiene and stop the habit of putting objects in the mouth) and problems with the suspension of presential classes and routine treatments (psychotherapy, speech therapy), which are a crucial part of the rehabilitation of most children with ASD. In general, for the interviewees, there was a regression in the development and socialization of their children. Some children became more aggressive and anxious, influencing the routine of the whole family. There was a worsening of eating habits and oral hygiene. Mothers signaled even strong difficulties in obtaining dental care for their child. Mothers frequently mentioned feelings of stress, insecurity and fear related to the difficulties of their child with ASD to comply with safety measures against COVID-19 and to be able to follow online classes. With the suspension of rehabilitative treatments for children, mothers needed to develop at home skills to perform some activities related to the therapeutic treatments that their children performed prior through the pandemic. In addition, many mothers started helping children, side by side, during online classes. There was an overload of work for the mothers. From this study, it was concluded that the pandemic had a major impact on the lives of children with ASD and their mothers. The impairment of educational and therapeutic activities indicated significant losses in children's development, with negative repercussions on general and oral health.