The Additional Disease Burden Accompanying a Delayed Diagnosis of Multiple Myeloma: Utilising a Large Real-World Evidence Base

Background

Multiple myeloma (MM) is one of the most difficult cancers to diagnose, leading to one of the longest delays in diagnosis of all cancers. Delays in diagnosis of MM can reduce survival and lead to complications; however, the extent of disease burden patients experience has not been fully explored from the patient perspective. Our large-scale real-world surveys explore the symptom profiles, disease burden, and the downstream impact on the quality of life (QoL) of MM patients with a delayed versus timely diagnosis.

Methods

MM patients participated in two national surveys in the UK. Patients were asked to provide demographics, information on their symptoms at diagnosis, and whether they received a timely (<3 months from initial symptoms) or delayed diagnosis (3 months or more from their initial symptoms). Patients subsequently completed the PROMIS-29 v2.0 Health-Related QoL Questionnaire where they were asked to reflect on their current experiences; having completed at least 1 line of treatment. The questionnaire assessed seven health domains (i.e. physical function, fatigue, pain interference, depression, anxiety, social activity participation, and sleep disturbance) alongside a 10-item pain intensity scale.

Results

586 MM patients completed Survey 1 and 617 patients completed Survey 2. Overall, patients reported a wide range of symptoms at diagnosis with ‘pain’ reported most frequently overall (74% of cases). Patients with a delayed diagnosis had significantly more symptoms ( M = 5, SD = 4), compared to those with a timely diagnosis ( M = 3, SD = 3), p < .001. MM patients with a delayed diagnosis also reported significantly more symptoms in 9 of the categories of symptoms (see Figure 1) compared to patients with a timely diagnosis, p < .001. Moreover, patients with a delayed diagnosis perceived more of their symptoms as having a ‘high impact’ on their daily lives at the time of diagnosis compared to those with a timely diagnosis, p < .001.

The next analysis assessed the likely order that symptoms manifest at diagnosis depending on whether patients had a delayed or timely diagnosis. The most frequently experienced first symptom in patients with a timely or delayed diagnosis was ‘pain’. Decision tree analysis showed that patients with a timely diagnosis who experienced ‘pain’ as their first symptom, were 57% more likely to experience spinal fractures as their next symptom. Conversely, those with a delayed diagnosis were 83% more likely to experience mobility issues as their second symptom.

The downstream impact of a delayed diagnosis revealed MM patients with a delayed diagnosis had significantly higher pain interference ( M = 57 vs 53), pain intensity ( M = 4 vs 3), sleep disturbance ( M = 53 vs 51), anxiety ( M = 56 vs 53), depression ( M = 53 vs 50) and fatigue ( M = 57 vs 55), compared to MM patients with a timely diagnosis. MM patients with a delayed diagnosis reported significantly lower physical functioning scores ( M = 43 vs 45) than patients with a timely diagnosis. Scores measuring the ability of patients to carry out social roles and activities were also significantly lower in patients with a timely than delayed diagnosis ( M = 42 vs 44).

Conclusions

Patients in these large-scale and real-world surveys experienced considerable disease burden at diagnosis when they had a delayed versus timely diagnosis, both in terms of frequency and range of symptoms. The results show the considerable impact of individual symptoms on the daily lives of patients at diagnosis, as well as the downstream impact delayed diagnosis has on the QoL of MM patients. The results offer a potential model for disease progression based on the staging of symptoms and a method for identifying MM patients in clinical practice.