NCT05070988

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

Oral Health Related Quality of Life of Patients With Rare Diseases Followed at Necker Hospital: a Qualitative Approach

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 28 (actual)
• Sponsor: Assistance Publique - Hôpitaux de Paris · Academic / Other
• Sex: All
• Age: 6 Years
• Healthy volunteers: Not accepted

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.

Conditions

• Rare Diseases

Interventions

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

Timeline

• Start date: 2021-10-20
• Primary completion: 2021-11-29
• Completion: 2021-11-29
• First posted: 2021-10-07
• Last updated: 2025-09-12

Locations

1 site across 1 country: France