BACKGROUND: As the COVID-19 pandemic unfolded in 2020, Myeloma Patients Europe (MPE) recognized that the pandemic was impacting the healthcare and lives of people with myeloma and AL amyloidosis, and their caregivers. Findings from a small UK study suggested that myeloma patients were more likely to die from COVID-19 than members of the general population who contracted the virus [Cook et al, 2020]. Focus groups were conducted to learn more about the impact of COVID-19 on the lives of patients and their families, with a focus on its impact on diagnosis and treatment.
METHOD: MPE researchers conducted four online focus groups in Europe examining the views and experiences of myeloma and AL amyloidosis patients and caregivers during the COVID-19 pandemic. Fifteen patients and two caregivers took part. Thirteen patients had myeloma and two had AL amyloidosis. Participants were from Spain (n = 6), the UK (n = 2), Belgium (n = 2), Germany (n = 2), the Netherlands (n = 1), Iceland (n = 1), Israel (n = 1), Poland (n = 1), and Romania (n = 1). Eleven patients had been diagnosed within the last few years, while four were living with myeloma for a decade or longer. Ten patients were receiving active treatment for myeloma or AL amyloidosis during the pandemic, while others were in remission.
RESULTS: Sixty percent of study participants reported that the COVID-19 pandemic negatively affected their treatment. Three patients said that medicines given in hospital (by infusion or injection) were delayed due to COVID-19 restrictions. Sometimes, the frequency of these treatments was reduced. In contrast, most patients taking oral medicines (tablets) reported that their treatment continued as normal. Seven participants said their or another patient’s invasive procedure (such as a bone marrow biopsy or stem cell transplant) had been delayed. These procedures took place after approximately 1–6 months later than originally scheduled, once HCPs and patients felt it was safe to do so. One patient reported an improvement in her treatment due to the pandemic restrictions. Her 4- to 5-hour long infusions of daratumumab in hospital had been switched to subcutaneous injections with fewer side-effects.
CONCLUSIONS: Findings suggest that COVID-19 had an impact on patients with myeloma and AL Amyloidosis and their treatments. Some aspects of this may be positive, with preference data showing that patients have a preference for oral administrations (Fifer et al, 2020) and as such, switching patients to at home treatment regimens may have both avoided treatment delays and also been in line with patient preferences for treatment administration. MPE suggest that the administration of treatments should be examined regularly. COVID-19 upended existing treatments and other healthcare services, but patients and their healthcare providers should be reviewing options on an ongoing basis to ensure both high quality of care and changes in patient preferences over time.
