Abstract
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.