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NCT03841422 Clinical Trial

Evaluation of Video-assisted Instructions of Nasal Self-packing in Patients With HHT

Hereditary Haemorrhagic Telangiectasia Clinical Trial

Official title:
Evaluation of Video-assisted Instructions of Nasal Self-packing in Patients With Hereditary Hemorrhagic Telangiectasia (HHT)

Clinical Trial Details — Status: Recruiting

Administrative data
NCT number NCT03841422
Other study ID # Nasal self-packing in HHT
Secondary ID
Status Recruiting
Phase
First received
Last updated
Start date January 30, 2019
Est. completion date December 2024

Study information
Verified date July 2023
Source University Hospital, Essen
Contact Freya Droege, Dr. med.
Phone +49201723
Email freya.droege@uk-essen.de
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial Summary

Inserting nasal self-packings is a secure method leaving patients more self-confident. We provide a video on https://www.youtube.com/watch?v=LaioLYfSJ-E demonstrating how to use nasal self-packings.

Description:

Inserting nasal self-packings is a secure method leaving patients more self-confident. In HHT centers, patients often learn how to use them, but these centers are rare. Providing a video on https://www.youtube.com/watch?v=LaioLYfSJ-E demonstrating how to use nasal self-packings may also help patients without access to HHT centers.

Recruitment information / eligibility
Status Recruiting
Enrollment 60
Est. completion date December 2024
Est. primary completion date July 2024
Accepts healthy volunteers No
Gender All
Age group 18 Years and older
Eligibility Inclusion Criteria: - age above 17 years old Exclusion Criteria: - patients younger than 18 years old - unable to provide informed consent

Study Design

Related Conditions & MeSH terms

  • Hereditary Haemorrhagic Telangiectasia
  • Telangiectasia, Hereditary Hemorrhagic
  • Telangiectasis

Intervention

Procedure:
• video-assisted nasal self-packing
video-assisted nasal self-packing

Locations
Country Name City State
Germany University Hospital Essen Essen Nordrhein Westphalen

Sponsors (1)
Lead Sponsor Collaborator
University Hospital, Essen

Country where clinical trial is conducted

Germany, 

References & Publications (3)

Droege F, Lueb C, Thangavelu K, Stuck BA, Lang S, Geisthoff U. Nasal self-packing for epistaxis in Hereditary Hemorrhagic Telangiectasia increases quality of life. Rhinology. 2019 Jun 1;57(3):231-239. doi: 10.4193/Rhin18.141. — View Citation

Faughnan ME, Palda VA, Garcia-Tsao G, Geisthoff UW, McDonald J, Proctor DD, Spears J, Brown DH, Buscarini E, Chesnutt MS, Cottin V, Ganguly A, Gossage JR, Guttmacher AE, Hyland RH, Kennedy SJ, Korzenik J, Mager JJ, Ozanne AP, Piccirillo JF, Picus D, Plauchu H, Porteous ME, Pyeritz RE, Ross DA, Sabba C, Swanson K, Terry P, Wallace MC, Westermann CJ, White RI, Young LH, Zarrabeitia R; HHT Foundation International - Guidelines Working Group. International guidelines for the diagnosis and management of hereditary haemorrhagic telangiectasia. J Med Genet. 2011 Feb;48(2):73-87. doi: 10.1136/jmg.2009.069013. Epub 2009 Jun 23. — View Citation

Shovlin CL, Guttmacher AE, Buscarini E, Faughnan ME, Hyland RH, Westermann CJ, Kjeldsen AD, Plauchu H. Diagnostic criteria for hereditary hemorrhagic telangiectasia (Rendu-Osler-Weber syndrome). Am J Med Genet. 2000 Mar 6;91(1):66-7. doi: 10.1002/(sici)1096-8628(20000306)91:13.0.co;2-p. — View Citation

Outcome
Type Measure Description Time frame Safety issue
Primary Evaluation of video-assisted teaching Evaluation of video-assisted teaching using a questionnaire. Data about using new media (Do you use a smartphone/ tablet (yes/no)? Do you use the internet (e.g. youtube, facebook, instagram...)?) Moreover, patients feeling loosing control (before and after using pneumatic nasal self-packing: how often do have the feeling of losing control (scale form 1 to 5, 1 = very often, 5 = never) and safety (after learning the nasal self-packing with pneumatic tamponades do you feel safe? (scale 1 to 5, 1 = not very safe, 5 = safe) is analyzed. Additional data about number of blood transfusions, hospitalty and doctoral consulation rates (regarding recurrent nosebleeds in the last 12 months: How many bloodtranfusions did you get (because of nosebleeds/ gastrointestinal bleedings/ both)? How often did you see a doctor or needed to be treated in hospital?) is documented. 1 year
Secondary Analyzing duration of consultation the duration of the consultation and seeing the video is documented and compared to the Duration of consultations in patients with HHT before having uploaded the video 1 year
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