 |
answer text |
<p>The number of patients with severe haemophilia A and haemophilia B for 2018 by
the number of bleeds they had and age groups 0 to 18 and over 18, is attached.</p><p>
</p><p>The National Haemophilia Database (NHD) have very limited bleed-level data
for patients with mild or moderate haemophilia who do not bleed frequently and do
not generally require home therapy. The non-severe patients using Haemtrack are skewed
towards the severe end of moderate and anyone with zero bleeds is very unlikely to
be reporting. For this reason, the NHD have excluded non-severe patients from these
results, as it makes the data unlikely to be robust.</p><p> </p><p>It should be noted
that the following limitations apply to this data:</p><p>1. The data is derived from
patient-reported Haemtrack home therapy diary data.</p><p>2. The data is limited to
patients who require home-therapy.</p><p>3. These results are prone to reporting bias
since uncompliant patients and patients treated on-demand, treated only when they
bleed, are under-represented in this sample. The data may therefore paint a slightly
optimistic picture.</p><p>4. About 85-90% of clinically severely affected (less than
2% VIII/IX) patients are managed with regular prophylaxis to prevent bleeding. Prior
to prophylaxis, patients treated on-demand bled between twice a week and once a fortnight
and, as the figures show, the mean annualised bleed rate has been dramatically reduced
to about four per year. However, our aim is for the patients to be bleed free, without
which the joints will not be fully protected from bleeding.</p>
|
|
