Quality of life of individuals with cleft lip and palate pre- and post-surgical correction of dentofacial deformity

Beluci, Marli Luiz; Genaro, Kátia Flores

doi:10.1590/s0080-623420160000200006

Cited by 23 publications

(23 citation statements)

References 23 publications

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“…Cleft lip and palate are among the most frequent congenital malformations, and healthcare guidance is fundamental for the construction of knowledge among mothers (28) . Therefore, identifying the areas with the greatest deficiency allows for a review of the intervention proposals, with the aim of improving the quality of care and, consequently, promoting health (29) .…”

Section: Discussionmentioning

confidence: 99%

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

Beluci

Mondini

Trettene

et al. 2019

Rev. esc. enferm. USP

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Objective: To evaluate the correlation between measures of quality of life and burden in family caregivers of infants with cleft lip and palate and to analyze possible associations between quality of life and sociodemographic variables. Method: Exploratory, cross-sectional study conducted in hospital specialized in the treatment of craniofacial anomalies, with caregivers who answered the following data collection instruments: sociodemographic characterization form, World Health Organization Quality of Life - BREF questionnaire and the Burden Interview Scale. The statistical analysis was conducted using the Pearson’s Correlation test, the Student’s t-test and the ANOVA test with a level of significance of 0.05. Results: 77 caregivers participated in the study. There was an inverse correlation between quality of life and burden in the Physical Health, Psychological, Social Relationships and Environment domains. There was a positive correlation between quality of life and family income in the Environment domain. Conclusion: The greater the burden on the caregiver, the lower was their perception of quality of life. Caregivers with higher family income and greater level of education presented a better perception quality of life in the Environment domain.

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Section: Discussionmentioning

confidence: 99%

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

Beluci

Mondini

Trettene

et al. 2019

Rev. esc. enferm. USP

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“…Several surgeries are common during the school-aged years, including secondary palatal surgery, alveolar bone grafts, and lip and/or nose revisions. Surgical correction of dentofacial differences in children with cleft lip/palate can result in improved quality of life (Antoun et al, 2015; Beluci and Genaro, 2016) but may also be associated with impaired short-term psychosocial functioning and concerns regarding psychological well-being (Augsornwan et al, 2011; Ruff et al, 2016a; Ruff et al, 2016b; Broder et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

Surgical Care for School-Aged Youth With Cleft

Ruff

Crerand

Sischo

et al. 2018

The Cleft Palate-Craniofacial Journal

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“…There may be reiterative surgical procedures in the early years of life and even during the teenage and young adult phase [13][14][15]. Parents with children suffering from rare diseases regularly express concerns about the long-term health outcomes for children who are born with an oral cleft, for example [16,17]. Existing studies on Head, Neck and Teeth RD are often case reports and/or gene mutation reports for one disease.…”

Section: Introductionmentioning

confidence: 99%

Management of rare diseases of the Head, Neck and Teeth: results of a French population-based prospective 8-year study

Friedlander

Choquet

Galliani

et al. 2017

Orphanet J Rare Dis

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Background: In the last ten years, national rare disease networks have been established in France, including national centres of expertise and regional ones, with storage of patient data in a bioinformatics tool. The aim was to contribute to the development and evaluation of health strategies to improve the management of patients with rare diseases. The objective of this study has been to provide the first national-level data concerning rare diseases of the head, neck and teeth and to assess the balance between demand and supply of care in France. Methods: Centres of expertise for rare diseases record a minimum data set on their clinical cases, using a list of rare Head, Neck and Teeth diseases established in 2006. The present analysis focuses on 2008 to 2015 data based on the Orphanet nomenclature. Each rare disease RD "case" was defined by status "affected" and by the degree of diagnostic certainty, encoded as: confirmed, probable or non-classifiable. Analysed parameters, presented with their 95% confidence intervals using a Poisson model, were the following: time and age at diagnosis, proportions of crude and standardized RD prevalence by age, gender and geographical site. The criteria studied were the proportions of patients in Paris Region and the "included cases geography", in which these proportions were projected onto the other French Regions, adjusting for local populations.Results: In Paris Region, estimated prevalence of these diseases was 5.58 per 10,000 inhabitants (95% CI 4.3-7.1). At December 31st 2015, 11,342 patients were referenced in total in France, of whom 7294 were in Paris Region. More than 580 individual clinical entities (ORPHA code) were identified with their respective frequencies. Most abnormalities were diagnosed antenatally. Nearly 80% of patients recorded come to Paris hospitals to obtain either diagnosis, care or follow up. We observed that the rarer the disease, the more patients were referred to Paris hospitals. Conclusions:A health network covering a range of aspects of the rare diseases problematic from diagnostics to research has been developed in France. Despite this, there is still a noticeable imbalance between health care supply and demand in this area.

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Quality of life of individuals with cleft lip and palate pre- and post-surgical correction of dentofacial deformity

Cited by 23 publications

References 23 publications

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

Surgical Care for School-Aged Youth With Cleft

Management of rare diseases of the Head, Neck and Teeth: results of a French population-based prospective 8-year study

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