Rare Diseases
Conditions
Keywords
Rare diseases, Oral health-related quality of life, Qualitative method
Brief summary
The main objective of the study is to assess the oral health-related quality of life of patients with rare diseases and followed in the rare disease centers of expertise at Necker Hospital in Paris by semi-structured interviews.
Detailed description
To date, few studies have used the qualitative method to analyze the oral health-related quality of life and the oral health care pathways of patients with rare diseases, all health sectors combined. The quantitative studies carried out using standardized questionnaires offer only a partial view of how patients feel, both children and adults. The main objective of the study is to assess the oral health-related quality of life of patients with rare diseases and followed in the rare disease centers of expertise at Necker Hospital in Paris by means of a semi-structured interview.
Interventions
OTHERSemi-structured interview
Semi-structured interview with the investigating doctor of the study lasting 30 minutes to an hour
Sponsors
URC-CIC Paris Descartes Necker Cochin
Assistance Publique - Hôpitaux de Paris
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
6 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Minor and adult patients with rare diseases aged of at least 6 years old and followed at the Necker Enfant Malades Hospital, Paris * Patients with the 3 most frequent rare diseases of each rare disease Necker reference center participating in the study (10 centers : Chronic And Malformative Disorders Of The Esophagus / Inflammatory diseases of the bile ducts and autoimmune hepatitis / Constitutional Bone Diseases / Inherited Metabolic Diseases / Biliary Atresia And Genetic Cholestases / Vascular Diseases Of The Liver / Developmental Anomalies and Malformative Syndromes of Ile-De-France / Rare Causes Intellectual Disabilities / Complex congenital heart defects / Childhood cerebrovascular pathologies) * Patients who consulted between 1.1.2017 and 1.1.2020 the relevant rare disease reference center at Necker hospital * Patients seen at least once in the medical genetics department of Necker Hospital * Information and non-opposition of adult patients / holders of parental authority of minor patients and minor patients to participate in the study
Exclusion criteria
Patients who do not speak French
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Oral health-related quality of life assessment | Day 0 | Qualitative method from a semi-structured interview. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Description of oral health care pathways | Day 0 | Description from the semi-structured interviews. |
| Inequalities in access to oral health care | Day 0 | Description of inequalities in access to oral health care. Description from the semi-structured interviews. |
Countries
France
Outcome results
None listed