Low-Risk MGUS Pathway

Summary Checklist of Actions

If you want more information click on the checklist.

• Inform the patient that they have a low risk MGUS and that they will be placed on a monitoring pathway.
• Collect new blood/urine samples for outstanding biochemical results if required.
• Be prepared:
• ... the patient may come in before their monitoring period with symptoms (significant fatigue or bone pain) that require testing and possible referral.
• ... the patient will attend the surgery for bloods to be taken at their designated monitoring time point.

FAQ

1. What is the aim of the low-risk MGUS pathway?

To safely monitor the monoclonal gammopathy patient cohort with the lowest risk of progression to myeloma whilst minimising stress and disruption to the patient's life.

2. What is the risk of progression to myeloma?

MGUS as a whole cohort (including those patients who may be clinically closer to smouldering myeloma), show an increasing progression rate of approximately 1%/year.

3. How will it work?

1. The patient will need to have a conversation with yourself (the GP) to make them aware that a monoclonal protein has been found in their serum and/or urine. You must advise them that they should keep coming to you if they have any symptoms that they would like to discuss. If you would like some further advice of how to talk to the patient about this, then please look at section 5.
2. You will need to review the patient’s recent lab results and check that a recent full blood count, calcium level and serum creatinine have been generated on the patient. If they haven’t then, you need to organise for new samples to be collected for these. The results will be picked up by the Low-Risk MGUS team who will check whether they require further action. If you have received notification from Immunology that you need to send in a urine for urine electrophoresis, then please do this as well.
3. The patient will be sent a letter by the Low-Risk MGUS team to their home address that will inform them that they are now on the pathway. It will reinforce that they are at a very low chance of progression but that this pathway is designed to monitor them just in case. It will advise that they will receive a letter when it is time to get bloods taken, which will be taken at the GP surgery.
4. At the correct time, a letter will be sent to the patient asking them to attend the surgery for blood tests to be taken. The letter will contain information on what bloods should be taken and what tests should be requested on ICE. The clinical details must state ‘LR MGUS monitoring’. A sample letter can be seen here.
5. The blood tests will be sent to the labs and results generated. The Low-Risk MGUS team will review the results and decide if the patient should remain as ‘monitoring’ or whether they need to be seen at Clinical Haematology. If the patient is to remain in monitoring, a comment will be placed on the immunoglobulin and electrophoresis results informing you of this. The patient will also receive a brief letter at their home address, telling them this also. If a referral is required to Clinical Haematology, you will be contacted. If this happens, you will need to contact the patient to inform them of this.
6. If the patient stops meeting the criteria for Low-Risk MGUS pathway, you will be informed and the patient will be written to at their home address to say that they no longer need to be on the pathway.

4. Does the patient ever need to be tested before their monitoring interval?

If the patient presents with significant fatigue or bone pain, then they should be tested for the following:

• Serum electrophoresis and serum free light chains Immunology (1x clotted SST tube – Gold top)
• Calcium levels, serum creatinine Biochemistry (1 x heparin tube – Green top)
• Full blood count Haematology (1 x EDTA tube – Purple top)

The clinical details should state ‘LR MGUS, fatigue/bone pain’. The Low-Risk MGUS team will review the results and contact you if there are any significant findings that require the patient to be referred to Clinical Haematology. If this happens, you will need to inform the patient. If no significant findings are observed, the patient will remain on the same monitoring timeline.

5. What should be considered when informing the patient that they have a monoclonal gammopathy?

• MGUS is a common condition (1 in 30, 50+ year olds are identified, this increases to 1 in 20, 70+ year olds).
• The exact cause for MGUS is not yet known.
• MGUS does not require treatment specifically. The majority of symptoms that a patient may have are associated with other medical problems.
• A small number of patients with MGUS each year (around 1 out of every 100) will show signs of their MGUS progressing to something more serious and this is the reason why they are going to be monitored.
• During monitoring, the patient will be sent a letter to ask them to come to the surgery for blood samples to be taken. They should bring the letter to the surgery as it will give instructions to the surgery on what blood samples to take.
• In the unlikely event that it looks like their MGUS is progressing, the hospital will contact their GP to ask that a referral is organised to Haematology so that they can be seen by a consultant.
• It is important that they continue to come and see their GP as they normally would if they develop any symptoms that make them feel unwell.

6. Questions?

• Contact the team at: lowriskmguspathway@ouh.nhs.uk