Amyloidosis clinical quality indicators
The clinical quality indicators for amyloidosis are:
AL amyloidosis
This is the clinical quality indicator for the proportion of patients started on chemotherapy for AL amyloidosis who were reviewed in our specialist clinic for chemotherapy efficacy and for any side-effects at three months.
Rationale
Patients with AL amyloidosis may tolerate chemotherapy poorly as a result of impaired organ function caused by their disease.
Local hospitals have little experience of treatment side-effects in this rare condition. Our follow-up service has been funded by Myeloma UK to improve care for these patients.
Our objectives
We aim to review all these patients at three months in our specialist clinic.
Current performance
Awaiting information.
New referrals to amyloidosis services
This is the clinical indicator for the proportion of newly referred patients seen within 28 days of referral to our natonal amyloidosis centre.
Rationale
Amyloidosis is a life-threatening systemic illness. Early treatment improves outcome and survival.
Our objectives
We aim to see over 95% of patients within 28 days of referral to our service with suspected amyloidosis.
Current performance
Awaiting information.
Periodic fever syndrome
This is the clinical quality indicator for the number of patients cared for by our national service for patients with cyropyrin-associated periodic syndromes (CAPS).
Rationale
Cyropyrin-associated periodic syndrome is an inheritied fever syndrome that affects one in a million per population. It can be completely controlled by treatment with canakinumab, a long-acting interleukin-1 blocking agent.
Our objectives
Our service was launched in April 2010 with the aim of providing specialist treatment to all eligible patients with the condition throughout the country.
Current performance
Awaiting information.