Priority 3 from the Myeloma (Canada) PSP

UNCERTAINTY: How can we improve the diagnosing (e.g., faster, less invasive) of myeloma, and what is the impact of earlier diagnosis on patient outcomes (e.g., organ damage, bone deterioration)? (JLA PSP Priority 3)
Overall ranking	3
JLA question ID	0113/3
Explanatory note	Many patients and caregivers reported that myeloma was diagnosed late and expressed a need for the earlier diagnosis of myeloma. Healthcare providers also wondered about the best way to diagnose the disease. Furthermore, participants speculated about the impact of earlier diagnosis on myeloma outcomes, such as bone deterioration or kidney damage. Many patients also reported a desire for a less invasive test to diagnosis myeloma (compared to bone marrow biopsy). Proposed avenues for research to explore include: improving general practitioners knowledge of myeloma, the use of routine tests that can be ordered by GPs, new criteria for the diagnosing of myeloma, and a definitive blood test to diagnosis myeloma.
Evidence	No evidence identified
Health Research Classification System category	Cancer and neoplasms

Extra information provided by this PSP
Original uncertainty examples	Are we finding ways to diagnose sooner? ~ Could the myeloma been detected earlier preventing a lot of the side effects and making treatment easier. ~ Why does it take so long to diagnose? ~ For future patients - there needs to be a better system to diagnose MM. ~ How can myeloma be diagnosed earlier, before it damages the kidneys or other organs? ~ Diagnosing as early as possible is important so any research leading to a simple method to diagnose very early in the disease progression would be important. ~ It took 18 months to get diagnosed. The definitive tests seem to be expensive and intrusive. It would be good to develop quicker, easier tests.
Submitted by	Please see the PSP Engagement Summary on the JLA website

Extra information provided by this PSP

Original uncertainty examples

Are we finding ways to diagnose sooner? ~ Could the myeloma been detected earlier preventing a lot of the side effects and making treatment easier. ~ Why does it take so long to diagnose? ~ For future patients - there needs to be a better system to diagnose MM. ~ How can myeloma be diagnosed earlier, before it damages the kidneys or other organs? ~ Diagnosing as early as possible is important so any research leading to a simple method to diagnose very early in the disease progression would be important. ~ It took 18 months to get diagnosed. The definitive tests seem to be expensive and intrusive. It would be good to develop quicker, easier tests.

Submitted by

Please see the PSP Engagement Summary on the JLA website

PSP information
PSP unique ID	0113
PSP name	Myeloma (Canada)
Total number of uncertainties identified by this PSP.	59 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	28 April 2021