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

NCT07191639 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 185

Last updated 2025-09-25

No results posted yet for this study

Summary

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.

Conditions

  • Hereditary Hemorrhagic Telangiectasia (HHT)

Interventions

OTHER

completion of the QOL-HHT questionnaire

filling in the QOL-HHT questionnaire when they come for consultation

Sponsors & Collaborators

  • Hospices Civils de Lyon

    lead OTHER

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2024-12-01
Primary Completion
2024-12-01
Completion
2025-05-01

Countries

  • France

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT07191639 on ClinicalTrials.gov