In our initial clinical descriptive analysis, over 75% of transplant-eligible, newly diagnosed MM patients had their treatment significantly changed during the COVID-19 pandemic; 39% of patients had a delayed ASCT and 37% having no ASCT upfront. Of those whose ASCT got delayed/deferred, 75% were put on holding chemotherapy to mitigate the risk of MM relapse; this excludes the 6 patients who needed 2nd line chemotherapy for confirmed disease progression. Participants presented high levels of fear and anxiety around COVID-19, with patients having a clear understanding of their particular vulnerability to infection. However, this understanding conflicted with their feelings around some changes to their care implemented to ensure their safety. COVID-19 specific precautions and shielding made patients miss social contact which negatively affected their mental wellbeing. More strikingly, the heightened anxiety around COVID-19 was not enough to put some patients off having an ASCT during this high-risk period.
Possibly explaining this conflicting dichotomy is our participants’ beliefs that ASCT is a route to a long remission and increased longevity. They also valued the chemotherapy-free period that previously tended to follow an ASCT before lenalidomide maintenance became NICE-approved in March 202127. This time off treatment implied a return to normality back to a life before their MM diagnosis, and a well-earned break from treatment-related side effects which participants associated with a better QoL. With so much expectation hinging on the ASCT, COVID-19 related treatment adjustments caused much disappointment and devastation amongst all participants. Also, not knowing when the ASCT service was going to resume led to patients feeling a total loss of control and high feelings of uncertainty. For most patients, information provided by healthcare staff about MM and its treatment was difficult to process, either because of feelings of shock that came with their new diagnosis or personal preference. Other aspects of communication were more positive, with patients continuing to feel well-supported by healthcare providers even when services became more remote and telephone-based during the COVID-19 pandemic. Remote appointments came with the advantages of safety, convenience and eliminating new barriers to face-to-face interactions caused by masks and visors. Nevertheless, patients were negatively affected by the additional strain COVID-19 placed on healthcare administrative logistics.
Our qualitative analysis expanded upon prior research reporting initial shock at diagnosis, with negative emotional problems complicating ambiguous perceptions that MM is both life menacing and manageable28,29. Our findings also highlighted additional anxieties COVID-19 placed on patients already struggling with their cancer; this will require special attention when counselling newly diagnosed MM patients in a post-COVID-19 environment. In the absence of cure, the broad aims of MM therapy are to control disease and prolong survival while maximising QoL30. In MM patients, health-related QoL is predominantly influenced by therapy, with improvements in disease-related symptoms potentially being offset by drug toxicity31. This is particularly relevant in the immediate stages of ASCT, since MM patients would not commonly be exposed to traditional cytotoxic chemotherapy before the HDM preceding transplantation. Previously published literature demonstrated that ASCT leads to a short-term deterioration in health-related QoL and symptom burden in MM32. However, this improves to baseline health status within one to two months post-ASCT, with long-term QoL improving further thereafter32. This improvement has been attributed to superior disease control which patients hope will translate to an increased life expectancy28,33. However, it may also reflect the benefits that come with the treatment-free period that used to follow ASCT. During this plateau phase, many patients enjoy reasonable QoL and wellbeing with several patients returning to pre-morbid lifestyles30. Our research reinforces this, with the perceived benefits of ASCT being so compelling that most patients were willing to take on the additional infection risk posed by COVID-19. This is despite fully appreciating their increased infection risk status. Yet, with lenalidomide maintenance post-ASCT now being standard of care, this highly desirable “chemotherapy-free period” will only last for 3 months after transplantation, during which QoL will be suboptimal while recovering from ASCT. As MM treatment strategies become more continuous both at diagnosis and at relapse, healthcare professionals should address these expectations when counselling patients about the benefits of ASCT.
Healthcare professionals providing inadequate clinical information to MM patients was previously reported34 and also emerged in our study. The benefits of adequate information provision are well described35. They include reduced anxiety and fear about cancer and treatment as well as improved QoL, therapy adherence, psychological wellbeing, daily functioning, and better engagement in decision-making35. Nevertheless, unmet information needs remain a challenge in current cancer care with little evidence on how barriers in information exchange can be targeted35. Shared decision-making healthcare models promoting patient empowerment is advocated as the optimal communication model for cancer patients36. However, we observed clear psychological barriers to understanding complex clinical information, which may be better addressed with efficacious and timely professional psychotherapeutic support.
This study is one of the first to respond to the need of qualitative patient data during a pandemic21, and the multidisciplinary nature of this analysis carried out by multiple researchers enhances the validity of our results and conclusions37,38. One study limitation is that participants were recruited from a single centre which may not be representative of all UK MM transplant services39, including geographical variations in COVID-19 prevalence and shielding guidance. While qualitative study designs provide in-depth data on patients’ experiences and perceptions, they can come with the caveat of social desirability and interviewer biases38,40. Also, the lack of supportive quantitative data that is sometimes used in mixed-methods research limits our ability to provide a broader and more multidimensional picture of the problems investigated in this study41.