Findings
Shortly after her diagnosis, “xxx” began to record her nose bleeds in
her homework diary, enabling her and her parents to keep a track of her
symptoms. Initially, she recorded the times of each nose bleed in
addition to an estimated severity. She also included any possible
exacerbating or trigger factors such as occurring during activity or in
a certain location. As medications were introduced “xxx” incorporated
their use into her symptom diary, an example of this can be seen in
appendix 1. Although “xxx’s” diary was developed independently, the
recording of her symptoms was in keeping with recommendations from Clark
et al. with some minor variations.
“xxx” developed a coding system to easily document events. Blue for
right nostril bleeds, green for left nostril bleeds, a yellow highlight
for oral tranexamic acid and a red highlight for topical tranexamic
acid. Through the use of different colours and highlights, it is easy to
see at a glance not only the number of nose bleeds in each month but the
more affected side and the impact of medications on future bleeds. By
enabling retrospective review of medication efficacy “xxx’s” diary has
indicated that although tranexamic acid can help control an active nose
bleed, its use has little effect on her future epistaxis frequency.
A particularly notable use of “xxx’s” diary was to time and monitor
the effect of nasal coblation therapy. At the end of 2020 nosebleed
frequency was seen to increase from a baseline of around 9-11 per month
to 16-17 per month (see appendix 2). Noticing this increase, “xxx’s”
parents were able to initiate early follow-up with both her GP to
arrange blood tests to check haemoglobin levels and with our unit for an
expedited appointment. Coblation therapy was subsequently arranged for
16/02/2021. Appendix 2 demonstrates the efficacy of the coblation
therapy with an immediate reduction of nose bleeds to 3 per month with
none heavier than ‘small’. Not only was it useful for our team to have
objective evidence of a significant improvement following coblation but
it has been helpful for “xxx” and her parents to look back at this
time and recall how effective coblation treatment can be. In this way,
her diary has helped “xxx” to view future treatments and their likely
necessity in a more positive light.