Discussion
Symptom diaries have a long history in the medical literature with
benefits including patient engagement, trigger identification, and
information gathering. Severe nosebleeds have always been a feature of
life for “xxx” and something that for the most part has been out of
her control. The creation of her symptom diary allowed her to form a
sense of ownership and understanding over her condition and accept it as
a part of herself. Chronic disease can strip suffers (and particularly
children) of a sense of self and autonomy as decisions are gradually
taken away from them. “xxx’s” diary has returned some of this control
back to her and has allowed her to finesse the use of her rescue
medications.
By removing cognitive and recollection biases, epistaxis diaries are a
useful tool to review in clinic. Objectively measuring the efficacy of
treatment and symptom severity can enable more personalised treatment
and allow surgery to be booked for a time when its efficacy will be
maximal.
Surgery, particularly surgery under a general anaesthetic is not
completely benign. It is accompanied by not only physical risks but
additional stress and anxiety for patients and/or their carers. This is
also true on a lesser scale for minimally invasive procedures such as
blood tests, especially in the case of children. A symptom diary can
help to minimise exposure to these procedures by only performing them at
a time when their impact will be maximised or when symptoms have become
unmanageable. Diaries can help to empower patients to engage in shared
decision making regarding these choices; the bidirectional sharing of
key information between patient and doctor will help to guide ongoing
management in colaberative way that improves the satisfaction of both
parties.
The important role of patient self-care in chronic conditions such as
diabetes and asthma is well understood, however, there is little
research as to the benefit of self-care and disease engagement in
patients who suffer from chronic epistaxis. Hayama et al. found that
although HHT can significantly impact QoL proportionally to epistaxis
severity, less than 50% of surveyed participants used prophylactic
medications or took lifestyle precautions. We suggest that by
facilitating the use of symptom diaries, patients will be encouraged to
take ownership of their disease, identify symptom triggers and therefore
take additional precautionary measures.