Oral Health Related Quality of Life of Patients With Rare Diseases: a Qualitative Approach

Assistance Publique - Hôpitaux de Paris28 enrolled

Overview

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.

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Rare Diseases

Interventions

Semi-structured interviewOTHER

Semi-structured interview with the investigating doctor of the study lasting 30 minutes to an hour

Eligibility

Sex: ALLMin age: 6 Years

Medical Language ↔ Plain English

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

Locations (1)

Hôpital Necker-Enfants Malades

Paris, France

Outcomes

Primary Outcomes

Oral health-related quality of life assessment

Qualitative method from a semi-structured interview.

Time frame: Day 0

Secondary Outcomes

Description of oral health care pathways

Description from the semi-structured interviews.

Time frame: Day 0

Inequalities in access to oral health care

Description of inequalities in access to oral health care. Description from the semi-structured interviews.

Time frame: Day 0

Data from ClinicalTrials.gov

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