Peter Sudworth

and 1 more

Objectives To assess the efficacy and implementation of an epistaxis symptom diary in the management of a child with de-novo HHT type 1. HHT is a cause of chronic, severe epistaxis which can lead to significant physical and psychogical morbidity. We propose that the use of symptom diaries can reduce associated patient morbidity and aid physicians in treatment planning. Participants We discuss an independently developed symptom diary for a 10-year-old girl with HHT, Patient x (“xxx”), and its subsequent impact. Including its uses for surgical and medical treatment planning. Design A patient developed epistaxis symptom diary was designed to including nosebleed timing and side of onset, estimated severity, exacerbating / trigger factors and use of medications. A phenomenological qualitative approach was taken to assessing the impact of the diary on “xxx’s” physical and psychological wellbeing. Setting “xxx’s” diary is a novel symptom diary for patients with of chronic epistaxis and HHT which can improve patient engagement with treatment, foster lifestyle changes, and aid clinicians in promoting tailored patient-centred care. Main outcome measures “xxx’s” diary has proved to be an extremely useful tool for patient xxx, her parents and her ENT team, having improved both her physical and psychological wellbeing. Results and Conclusions We would recommend detailed symptom monitoring for all patients with severe epistaxis and HHT and suggest “xxx’s” diary as a template for this.