National Healthtree Survey on Pain and Opioid Use Patterns and Perceptions Among Patients with Multiple Myeloma

Background: Pain is one of the most frequent and distressing symptoms in multiple myeloma (MM). Opioids are the gold standard in the management of moderate to severe pain; however, overuse has been associated with a significant public health crisis. High rates of opioid use independent of bony disease have been reported, with a negative impact of chronic use on survival after autologous stem cell transplant (ASCT) (Sweiss et al, ASH 2022). Given this, we sought to determine patterns of pain and opioid use in a large cohort of MM patients, with critical insight into patient perspectives.

Methods: Using the HealthTree Cure Hub platform, a prospectively administered 31-question survey was fielded from May 2023 to July 2024 to those enrolled on the online platform. Opioid abuse risk was assessed using a validated opioid risk tool (ORT) and based on that respondents were categorized as low (LR, 0-3) or moderate-high (MHR, ≥4) risk (Webster et al, 2005).

Results: 563 participants were surveyed with 98% having a diagnosis of symptomatic MM. Average age was 64.6 ± 9.7 years, 239 (61%) were female, and 355 (89%) were White. 306 (54%) described experiencing daily pain with severity as mild (n=214, 42%) or moderate (n=221, 43%) in the majority. Pain “often” or “always” impacted mood in 68 (13%), sleep in 119 (26%), and relations with others in 151 (31%) respondents. Pain was attributed to MM (n=305, 60%) or its treatment (n=196, 39%). Despite being told they were in remission by their doctor, 254 (50%) patients continued to have pain.

Overall, 29% (n=146) believed their pain was inadequately managed. 205 (38%) indicated they rarely/never discuss pain with their oncology care team. 126 (25%) indicated they have intentionally understated their pain, either due to fear of having to start new treatment (32%) or because they did not feel like their doctor listened to them when describing pain (22%). A palliative care team was involved with pain management in a minority of respondents (9%). Feeling ignored by or being a “bother” to the treating team was a prevalent perceived barrier to treatment of pain (n=127, 26%).

142 (29%) of 486 patients who completed the ORT were identified as MHR for opioid abuse. 417 (76%) respondents indicated they have taken an opioid for pain, with MHR patients using opioids more than LR (87% v 72%, p<0.001). A majority initiated opioids after MM diagnosis (n=328, 79%). Despite being told they were in remission, 115 (23%) continued to use opioids, with MHR patients using opioids more during remission than LR (19% v 30%, p=0.02). When looking at the post-ASCT period, we found that 162 (40%) were taking an opioid prior to ASCT, and 15% started opioids for first time during hospitalization. Among new users, 47% were discharged on opioids and 26% continued opioids for > 3 months. While the majority (94%) indicated that their prescriber never declined to prescribe opioids, 150 (55%) had never had a discussion about stopping opioids, and 142 (35%) indicated that they were not educated on opioids by their oncology provider team. 15% have co-administered opioids and benzodiazepines, while 17% took opioids more frequently than prescribed. Co-prescription with benzodiazepines was higher in MHR patients (p=0.05). Despite 39% of patients attributing pain to treatment side effects such as neuropathic pain, pharmacologic measures such as anticonvulsants (18%) and antidepressants (13%) were employed infrequently.

Conclusion: In the largest prospective survey to date addressing pain and opioids in MM, we found that pain is frequent, even when in remission, and adversely impacts daily quality of life. Most report a history of opioid use, with a high prevalence after MM diagnosis and ongoing use during disease remission, especially in patients that are moderate-to-high risk of opioid abuse. Transplant introduces opioids to new users and this in turn leads to prolonged use. Inadequate pain management can be attributed to poor communication with the oncology team, patient understatement of pain, and infrequent consultation with palliative care. Because 55% of patients in our cohort had never had a discussion about stopping opioids, this highlights an opportunity to reduce opioid-related side effects. Early palliative care engagement, use of non-opioid analgesics, and opioid abuse risk assessment all might assist in reducing opioid use where unnecessary.