Video-based instructions about nasal self-packing for patients with hereditary hemorrhagic teleangiectasia (HHT)

Introduction The quality of life of many patients with hereditary hemorrhagic teleangiectasia (HHT, M. Osler) is greatly reduced due to recurrent episodes of epistaxis. The aim of the study was to analyse the learning of the self-tamponade by means of video-based guidance.

Methods Patients with HHT watched a self-produced video on YouTube^® (>1200 views) about using pneumatic nasal self-packings (PNT) and answered a questionnaire including the Epistaxis Severity Score (ESS).

Results Of the 36 HHT patients surveyed (average ESS: mean (m) 6.1 ± standard deviation (sd) 1.8; 36/36, 100%; 58% (22/36) were not familiar with the tamponade shown in the video. About half of the patients (22/36, 58%) had previously used non-medical products for nasal self-packing, e.g. handkerchiefs (13/22). Of the patients who were familiar with PNT, only 43% had already used it at least once (6/14). Two patients had already watched the instructional YouTube^® video before the consultation at University Hospital Essen. Those who learned to use nasal self-packings with the video found it helpful (27/28; m ± SD: 4.6 ± 0.6; scale 1= not helpful at all-5= very helpful) and understood the method of nasal self-packings in principle ( (8 patients learned the nasal self-packing at the meeting of the support group or by the treating doctor).

In addition, this made them feel “safe” with regard to self-treatment of their epistaxis (m ± SD: 4.0 ± 0.7; scale 1 = very insecure – 5 = very safe) and also in the use of PNT (m ± SD: 3.5 ± 0.7; Scale 1-5).

Discussion The video-based instructions about how to use nasal self-packings offers patients with HHT an understandable way of self-treatment in the case of recurrent epistaxis, which increase the subjective feeling of security.

Poster-PDF A-1288.pdf

Conflict of interest

Der Erstautor gibt keinen Interessenskonflikt an.

Publication History

Article published online:
13 May 2021