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

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

28 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-10-20

Study Completion Date

2021-11-29

Brief Summary

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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.

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Detailed Description

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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.

Conditions

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Rare Diseases

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Study Groups

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Rare diseases

Children and adult patients with rare diseases and followed at the Necker Enfant Malades Hospital, Paris

Semi-structured interview

Intervention Type OTHER

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

Interventions

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Semi-structured interview

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

Intervention Type OTHER

Eligibility Criteria

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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