Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study
Autor(a) principal: | |
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Data de Publicação: | 2020 |
Outros Autores: | , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Institucional da UFMG |
Texto Completo: | https://doi.org/10.1590/1807-3107bor-2020.vol34.0109 http://hdl.handle.net/1843/61371 https://orcid.org/0000-0002-3028-7095 https://orcid.org/0000-0003-2833-2317 https://orcid.org/0000-0002-5902-7481 https://orcid.org/0000-0003-3364-4024 |
Resumo: | The purpose of the present study was to compare the perceptions of the parents/ caregivers of young people with and without Mucopolysaccharidosis (MPS) with regards to their oral health-related quality of life (OHRQoL). A cross-sectional study was conducted with 29 individuals with MPS and 29 normotypic individuals aged three to 21 years and their parents/caregivers. All parents/caregivers of young people with MPS in follow-up at two reference hospitals in the city of Belo Horizonte, southeastern Brazil, were invited to participate in the study. Individuals without MPS were recruited from the pediatric clinics of both hospitals. Parents/caregivers answered a structured questionnaire addressing the sociodemographic characteristics, behavioral habits and medical and dental history of the children as well as the Brazilian short-form version of the Parental-Caregiver (P-CPQ). The individuals with and without MPS were examined for malocclusion, dental caries and oral hygiene by an examiner who had undergone training and calibration exercises. Mean age of the subjects was 12.1 years (± 4.2). Comparing total P-CPQ scores and scores on the oral symptoms, functional limitations and wellbeing domains, the parents/caregivers individuos with MPS reported a statistically significant greater negative impact on OS domain than their counterparts. Regarding the clinical variables, malocclusion was also associated a greater negative impact on OHRQoL of young people with MPS when compared to those of young people without MPS. Our findings show the great negative impact caused by the malocclusion of young people with MPS. |
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2023-11-24T20:05:26Z2023-11-24T20:05:26Z202034https://doi.org/10.1590/1807-3107bor-2020.vol34.01091807-3107http://hdl.handle.net/1843/61371https://orcid.org/0000-0002-3028-7095https://orcid.org/0000-0003-2833-2317https://orcid.org/0000-0002-5902-7481https://orcid.org/0000-0003-3364-4024The purpose of the present study was to compare the perceptions of the parents/ caregivers of young people with and without Mucopolysaccharidosis (MPS) with regards to their oral health-related quality of life (OHRQoL). A cross-sectional study was conducted with 29 individuals with MPS and 29 normotypic individuals aged three to 21 years and their parents/caregivers. All parents/caregivers of young people with MPS in follow-up at two reference hospitals in the city of Belo Horizonte, southeastern Brazil, were invited to participate in the study. Individuals without MPS were recruited from the pediatric clinics of both hospitals. Parents/caregivers answered a structured questionnaire addressing the sociodemographic characteristics, behavioral habits and medical and dental history of the children as well as the Brazilian short-form version of the Parental-Caregiver (P-CPQ). The individuals with and without MPS were examined for malocclusion, dental caries and oral hygiene by an examiner who had undergone training and calibration exercises. Mean age of the subjects was 12.1 years (± 4.2). Comparing total P-CPQ scores and scores on the oral symptoms, functional limitations and wellbeing domains, the parents/caregivers individuos with MPS reported a statistically significant greater negative impact on OS domain than their counterparts. Regarding the clinical variables, malocclusion was also associated a greater negative impact on OHRQoL of young people with MPS when compared to those of young people without MPS. Our findings show the great negative impact caused by the malocclusion of young people with MPS.O objetivo do presente estudo foi comparar as percepções dos pais/cuidadores de jovens com e sem Mucopolissacaridose (MPS) em relação à qualidade de vida relacionada à saúde bucal (QVRSB). Foi realizado um estudo transversal com 29 indivíduos com MPS e 29 normotípicos com idade entre três e 21 anos e seus pais/cuidadores. Todos os pais/cuidadores de jovens com MPS em acompanhamento em dois hospitais de referência da cidade de Belo Horizonte, sudeste do Brasil, foram convidados a participar do estudo. Indivíduos sem MPS foram recrutados nas clínicas pediátricas de ambos os hospitais. Os pais/cuidadores responderam a um questionário estruturado abordando as características sociodemográficas, hábitos comportamentais e histórico médico e odontológico das crianças, bem como a versão abreviada brasileira do Parental-Caregiver (P-CPQ). Os indivíduos com e sem MPS foram examinados quanto a má oclusão, cárie dentária e higiene bucal por um examinador que passou por exercícios de treinamento e calibração. A média de idade dos sujeitos foi de 12,1 anos (± 4,2). Comparando os escores totais do P-CPQ e os escores nos domínios de sintomas orais, limitações funcionais e bem-estar, os pais/cuidadores de indivíduos com MPS relataram um impacto negativo maior estatisticamente significativo no domínio OS do que seus pares. Em relação às variáveis clínicas, a má oclusão também esteve associada a um maior impacto negativo na QVRSB de jovens com MPS quando comparados aos de jovens sem MPS. Nossos achados mostram o grande impacto negativo causado pela má oclusão em jovens com MPS.CNPq - Conselho Nacional de Desenvolvimento Científico e TecnológicoFAPEMIG - Fundação de Amparo à Pesquisa do Estado de Minas GeraisCAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível SuperiorOutra AgênciaengUniversidade Federal de Minas GeraisUFMGBrasilFAO - FACULDADE DE ODONTOLOGIABrazilian oral researchMucopolissacaridosesDoenças rarasQualidade de vidaSaúde bucalAssistência odontológica para pessoas com deficiênciasMucopolysaccharidosisRare diseasesQuality of lifeOral healthDental care for disabledOral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional studyQualidade de vida relacionada à saúde bucal de jovens com mucopolissacaridose: estudo transversal pareadoinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articlehttps://www.scielo.br/j/bor/a/JLyrwtbBDQxpSnFjMjnWRmy/?lang=en#Tahyná Duda Deps de AlmeidaNatália Cristina Ruy CarneiroBelinda NicolauIsabela Almeida PordeusAna Cristina Borges de Oliveiraapplication/pdfinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFMGinstname:Universidade Federal de Minas Gerais (UFMG)instacron:UFMGLICENSELicense.txtLicense.txttext/plain; charset=utf-82042https://repositorio.ufmg.br/bitstream/1843/61371/1/License.txtfa505098d172de0bc8864fc1287ffe22MD51ORIGINALOral health-related quality of life of young people with mucopolysaccharidosis_ a paired cross-sectional study.pdfOral health-related quality of life of young people with mucopolysaccharidosis_ a paired cross-sectional study.pdfapplication/pdf264670https://repositorio.ufmg.br/bitstream/1843/61371/2/Oral%20health-related%20quality%20of%20life%20of%20young%20people%20with%20mucopolysaccharidosis_%20a%20paired%20cross-sectional%20study.pdfe70802ba2423be8806ff30ab912efa1aMD521843/613712023-11-24 17:05:27.042oai:repositorio.ufmg.br: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Repositório de PublicaçõesPUBhttps://repositorio.ufmg.br/oaiopendoar:2023-11-24T20:05:27Repositório Institucional da UFMG - Universidade Federal de Minas Gerais (UFMG)false |
dc.title.pt_BR.fl_str_mv |
Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study |
dc.title.alternative.pt_BR.fl_str_mv |
Qualidade de vida relacionada à saúde bucal de jovens com mucopolissacaridose: estudo transversal pareado |
title |
Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study |
spellingShingle |
Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study Tahyná Duda Deps de Almeida Mucopolysaccharidosis Rare diseases Quality of life Oral health Dental care for disabled Mucopolissacaridoses Doenças raras Qualidade de vida Saúde bucal Assistência odontológica para pessoas com deficiências |
title_short |
Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study |
title_full |
Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study |
title_fullStr |
Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study |
title_full_unstemmed |
Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study |
title_sort |
Oral health-related quality of life of young people with mucopolysaccharidosis: a paired cross-sectional study |
author |
Tahyná Duda Deps de Almeida |
author_facet |
Tahyná Duda Deps de Almeida Natália Cristina Ruy Carneiro Belinda Nicolau Isabela Almeida Pordeus Ana Cristina Borges de Oliveira |
author_role |
author |
author2 |
Natália Cristina Ruy Carneiro Belinda Nicolau Isabela Almeida Pordeus Ana Cristina Borges de Oliveira |
author2_role |
author author author author |
dc.contributor.author.fl_str_mv |
Tahyná Duda Deps de Almeida Natália Cristina Ruy Carneiro Belinda Nicolau Isabela Almeida Pordeus Ana Cristina Borges de Oliveira |
dc.subject.por.fl_str_mv |
Mucopolysaccharidosis Rare diseases Quality of life Oral health Dental care for disabled |
topic |
Mucopolysaccharidosis Rare diseases Quality of life Oral health Dental care for disabled Mucopolissacaridoses Doenças raras Qualidade de vida Saúde bucal Assistência odontológica para pessoas com deficiências |
dc.subject.other.pt_BR.fl_str_mv |
Mucopolissacaridoses Doenças raras Qualidade de vida Saúde bucal Assistência odontológica para pessoas com deficiências |
description |
The purpose of the present study was to compare the perceptions of the parents/ caregivers of young people with and without Mucopolysaccharidosis (MPS) with regards to their oral health-related quality of life (OHRQoL). A cross-sectional study was conducted with 29 individuals with MPS and 29 normotypic individuals aged three to 21 years and their parents/caregivers. All parents/caregivers of young people with MPS in follow-up at two reference hospitals in the city of Belo Horizonte, southeastern Brazil, were invited to participate in the study. Individuals without MPS were recruited from the pediatric clinics of both hospitals. Parents/caregivers answered a structured questionnaire addressing the sociodemographic characteristics, behavioral habits and medical and dental history of the children as well as the Brazilian short-form version of the Parental-Caregiver (P-CPQ). The individuals with and without MPS were examined for malocclusion, dental caries and oral hygiene by an examiner who had undergone training and calibration exercises. Mean age of the subjects was 12.1 years (± 4.2). Comparing total P-CPQ scores and scores on the oral symptoms, functional limitations and wellbeing domains, the parents/caregivers individuos with MPS reported a statistically significant greater negative impact on OS domain than their counterparts. Regarding the clinical variables, malocclusion was also associated a greater negative impact on OHRQoL of young people with MPS when compared to those of young people without MPS. Our findings show the great negative impact caused by the malocclusion of young people with MPS. |
publishDate |
2020 |
dc.date.issued.fl_str_mv |
2020 |
dc.date.accessioned.fl_str_mv |
2023-11-24T20:05:26Z |
dc.date.available.fl_str_mv |
2023-11-24T20:05:26Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/1843/61371 |
dc.identifier.doi.pt_BR.fl_str_mv |
https://doi.org/10.1590/1807-3107bor-2020.vol34.0109 |
dc.identifier.issn.pt_BR.fl_str_mv |
1807-3107 |
dc.identifier.orcid.pt_BR.fl_str_mv |
https://orcid.org/0000-0002-3028-7095 https://orcid.org/0000-0003-2833-2317 https://orcid.org/0000-0002-5902-7481 https://orcid.org/0000-0003-3364-4024 |
url |
https://doi.org/10.1590/1807-3107bor-2020.vol34.0109 http://hdl.handle.net/1843/61371 https://orcid.org/0000-0002-3028-7095 https://orcid.org/0000-0003-2833-2317 https://orcid.org/0000-0002-5902-7481 https://orcid.org/0000-0003-3364-4024 |
identifier_str_mv |
1807-3107 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.ispartof.pt_BR.fl_str_mv |
Brazilian oral research |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Universidade Federal de Minas Gerais |
dc.publisher.initials.fl_str_mv |
UFMG |
dc.publisher.country.fl_str_mv |
Brasil |
dc.publisher.department.fl_str_mv |
FAO - FACULDADE DE ODONTOLOGIA |
publisher.none.fl_str_mv |
Universidade Federal de Minas Gerais |
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