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.