ArticleOrphanet journal of rare diseases2019
Oral health related quality of life of children and adolescents affected by rare orofacial diseases: a questionnaire-based cohort study.
Article in Orphanet journal of rare diseases, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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13 citing papers in PubMed, 1 synthesis or guideline pooled it, 28 citations in OpenAlex.
- The German S3-level guideline for the diagnosis and management of rare dental disorders.Clinical oral investigations · 2026Guideline
- Mapping Dental Care for Children and Adolescents With Rare Diseases: A Brazilian Multicentre Study.Community dentistry and oral epidemiology · 2026Article
- Investigating the relationship between gestational diabetes mellitus and the amount of dental plaque and decayed in pregnant women in Hamadan: A case-control study.Journal of education and health promotion · 2026Article
- Bone disease and oromaxillofacial disorders: a cross- sectional study in a Tanzanian pediatric population.Orphanet journal of rare diseases · 2025Article
- The health-care utilization and economic burden in patients with genetic skeletal disorders.Orphanet journal of rare diseases · 2024Article
- Determinants of dental care use in patients with rare diseases: a qualitative exploration.BMC oral health · 2023Article
- Literature Review on Health Emigration in Rare Diseases-A Machine Learning Perspective.International journal of environmental research and public health · 2023Review
- Impact of claudin-10 deficiency on amelogenesis: Lesson from a HELIX tooth.Annals of the New York Academy of Sciences · 2022Article
- Consideration of oral health in rare disease expertise centres: a retrospective study on 39 rare diseases using text mining extraction method.Orphanet journal of rare diseases · 2022Article
- Rare Disorders: Diagnosis and Therapeutic Planning for Patients Seeking Orthodontic Treatment.Journal of clinical medicine · 2022Article
- An Analysis of Medical Care Services for Children With Rare Diseases in the Russian Federation.Frontiers in pharmacology · 2021Article
- Psychometric Analyses of the Indian (Hindi) Version of the Child Perception Questionnaire (CPQChildren (Basel, Switzerland) · 2020Article
- Oral health-related quality of life in Loeys-Dietz syndrome, a rare connective tissue disorder: an observational cohort study.Orphanet journal of rare diseases · 2019Article
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Authors and funding
10 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRare diseases affecting the teeth, the oral cavity and the face are numerous, each of them present specific characteristics, and is a life-long condition. The aim of the study was to assess the association between Oral health-related quality of life (OHRQoL), and demographic characteristics, clinical and dental factors, and psycho-social characteristics to investigate that oral symptoms are not the main factors underlying a decrease in OHRQoL. MATERIAL AND
methodsWe conducted a national cohort study in French centres for rare diseases (RD) specialized in orofacial diseases. The inclusion criteria were: to have received care in RD centres over the last 5 years (2012-2017) and to have been between 6 and 17 years of age on September 1, 2017. Patients were invited to answer a questionnaire composed of socio-demographic, clinical and dental questions, psychosocial questions and then fill in the Child-OIDP Index. At the end of the questionnaire, a free space was left for the patient to add a verbatim comment to provide qualitative data. Thematic analysis was used to analyze the verbatim answers.
resultsComplete data were available for 110 patients. The sample included 44.5% boys and 55.5% girls. Ages ranged from 6 to 17 years old and 68.2% were between 6 to 12 years old and 31.8% were between 13 and 17 years old. Factor associated with a lower OHRQoL were: being a girl (p = 0.03), renouncement to dental care for financial reasons (p = 0.01), having syndromic disease (p = 0.01), having a problem with tooth shape and color (p = 0.03), feeling isolated, alone and different from other children (p = 0.003 and p = 0.02). Qualitative analysis highlighted very little recourse to psychological care and patients reported great anxiety and fear about the future.
conclusionOHRQoL of children suffering from these diseases is impaired, especially from the psychosocial point of view but also from that of the course of treatment and access to care. There is a need to improve the legibility of care pathways and the financial coverage of treatments.
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