Description of the Impact of Symptoms on Quality of Life in HHT Disease: DISQUO

Civil Hospices of Lyon

Status: Completed

Conditions: Hereditary Hemorrhagic Telangiectasia (HHT)

Treatments: Other: completion of the QOL-HHT questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT07191639

24-5147

Details and patient eligibility

About

In 2017, the ELECT-RO study led, firstly, to the creation of a tool to measure quality of life (QoL) specific to HHT (hereditary haemorrhagic telangiectasia disease), QoL-HHT, based on patients' experiences, their representations and their difficulties. Secondly, the ELECT-RO study demonstrated the validity of the measurement scale, meaning that QoL-HHT does indeed measure patients' QoL and is therefore a reference tool.

QoL-HHT gives investigators a good understanding of the different aspects of patients' QoL (physical limitations, concerns about bleeding, concerns about the evolution of the disease, social relationships, relationships with healthcare professionals and the experience of the disease), whether they are affected or not, at an individual level.

Today, investigators believe it is important to take a more global (population-based) view of the aspects of quality of life affected by HHT. While studies have shown the importance of the role of epistaxis (frequency, duration, intensity, experience) in QoL, what about other symptoms and clinical signs?

The DISQUO study, which the researchers plan to start today, is a follow-up to ELECT-RO. It should enable the researchers to gain a better understanding of the QoL of people with HHT and the impact of each symptom of HHT on patients' QoL.

The DISQUO study will therefore allow the investigators to gain a better understanding of the impact of HHT symptoms on the different areas of patients' QoL.

Enrollment: 185 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Patient with clinically (presence of at least 3 Curaçao criteria) and/or molecularly confirmed HHT disease
• Patient of legal age (over 18 years old)
• Patient who has received the information and has not objected to taking part in the study

Exclusion criteria

• Patients unable to read a questionnaire written in French
• Adults protected by law

Trial design

185 participants in 1 patient group

HHT patients

Description:

completion of the QoL-HHT questionnaire during a consultation at the reference centre

Treatment:

Other: completion of the QOL-HHT questionnaire