Clinical trial NCT03841422: Evaluation of Video-assisted Instructions of Nasal Self-packing in Patients with HHT
Official title: Evaluation of Video-assisted Instructions of Nasal Self-packing in Patients with Hereditary Hemorrhagic Telangiectasia (HHT)
Study type: OBSERVATIONAL
Overall status: ACTIVE_NOT_RECRUITING
Conditions: Hereditary Haemorrhagic Telangiectasia
Keywords: hereditary hemorrhagic telangiectasia
video-assisted teaching
nasal self-packing
Lead sponsor: University Hospital, Essen
Sponsor class: OTHER
First posted: 2019-02-15
Enrollment: 60
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Patients with hereditary hemorrhagic telangiectasia who often suffer from recurrent nosebleeds

Brief 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.

Detailed 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.

Eligibility criteria: Inclusion Criteria:

* age above 17 years old

Exclusion Criteria:

* patients younger than 18 years old
* unable to provide informed consent

Primary outcomes:
measure: Evaluation of video-assisted teaching
timeFrame: 1 year
Secondary outcomes:
measure: Analyzing duration of consultation
timeFrame: 1 year
Other outcomes:
Locations:
city: Essen
country: Germany
facility: University Hospital Essen
state: Nordrhein Westphalen
Study officials:
affiliation: University Hospital, Essen
name: Freya Droege, Dr. med.
role: PRINCIPAL_INVESTIGATOR
affiliation: University Hospital, Essen
name: Freya Droege, Dr. med.
role: STUDY_CHAIR
References:
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.
citation: 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.
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.