One of the highlights of the service at Royal Derby Hospital was the development of an Amyloidosis MDT to coordinate and improve the service provided for their patients with AL amyloidosis. Consultant Haematologist, Dr Firas Al Kaisi at the Royal Derby Hospital, talks to Myeloma UK about the challenges of diagnosing AL amyloidosis, highlighting the importance of a multidisciplinary team (MDT).
Recognising the need for the MDT
AL amyloidosis is a relatively rare disease that approximately 500 patients in the UK are diagnosed with each year. In amyloidosis, an abnormal protein (amyloid) accumulates in tissues and organs all over the body and can affect one or more organs simultaneously, leading to patients being referred to a variety of clinical departments for their diagnosis.
AL amyloidosis diagnosis is often delayed. The pattern of amyloid deposition is unique to each patient, but the build-up of amyloid gradually damages the affected organs and tissues, causing symptoms. Usually, more than one organ is affected, resulting in patients being referred to various specialities. The condition is so rare that there is often a lack of awareness and understanding of the necessary investigations to establish a diagnosis.
The idea for an AL amyloidosis MDT started almost one year before the Royal Derby Hospital set it up formally. Within haematology, we identified a need to streamline cardiac imaging for newly diagnosed AL amyloidosis patients, provide expert reporting, and instigate protocols for cardiac monitoring for those patients who would need it when treatment begins. The cardiology team were finding patients with echocardiography or cardiac MRIs suggestive of an amyloidotic process. Similarly, radiology teams were picking up DPD scans with positive cardiac uptakes. We realised we needed to unify our practice to provide patients with a more comprehensive diagnostic service.
The first MDT in Derbyshire
The combination of hard work and dedication from the MDT members lead to the establishment of the service, the first within the Derbyshire area.
The core members of the MDT include Dr Firas Al-Kaisi (Myeloma Lead), Dr Caroline Harvey (Myeloma Consultant), Dr Surojit Bose (Cardiology Consultant), Dr Nitin Kolhe (Renal Consultant) and Dr James Birchall (Consultant Nuclear Physician and Radiologist). The meeting is also often attended by the Myeloma Clinical Nurse Specialists. The Cancer Business Unit supported the MDT through the MDT haematology coordinators.
Streamlining AL amyloidosis diagnosis
Soon after the first few meetings, we established a framework and referral pathways. Patients were referred from various specialities, and we continued to review positive imaging. Internal comms and hospital intranet adverts helped establish Trust-wide awareness and recognition of the MDT, and the number of referrals began to grow.
The MDT follows the National Amyloidosis Centre (NAC) diagnostic pathways and use accessible tools such as cardiac MRI and DPD scanning; renal, cardiac, and fat pad biopsies; and even genetic testing for ATTR cases to assess patients. The results from these tests are discussed as an MDT. Patients who are found to have AL amyloidosis are treated locally under the care of the myeloma team and referred to the NAC for expert advice. ATTR patients receive guideline-directed heart failure therapy locally.
Developing the service
The referral numbers to the MDT continues to grow as the service becomes embedded within the Trust. This increased recognition is helping to raise awareness of amyloidosis and has provided a clear referral pathway for patients with a rare condition that can often be missed.
We continue to follow the expert advice that our colleagues at the NAC provided, and the formation of the MDT has established a closer working relationship with them. This will help us to develop our amyloidosis services further locally and allow us to provide better hospital care.
The MDT members are proud of everything we have achieved together so far and hopeful of the positive impact it will create in the diagnosis and care of our patients.
Written by Dr Firas Al-Kaisi (on behalf of the Derby Amyloid MDT)
Myeloma Lead
Royal Derby Hospital