Varied Types, Levels of Support Needed for Patients With Multiple Myeloma

Patients with multiple myeloma (MM) could experience an alleviated overall burden and improved outcomes by focusing on various levels and types of support to improve patient care, according to a study published in Healthcare.¹ This type of support can include assistance with insurance, information on their disease, and connections to financial resources.

MM affects less than 1% of all Americans, with 35,780 new cases expected to be diagnosed this year.² The cancer primarily affects plasma cells in the bone marrow of patients with the condition, and while targeted and immunotherapies have been able to prolong the lives of people living with MM, a lack of a cure has made the condition more chronic. Optimizing patient care requires knowing about the patient perspective on their disease burden and their barriers to care. The study aimed to map the prioritized needs and experiences of patients with MM using a series of exploratory groups that would help to identify the priorities of patients.¹

Investigators conducted 2 sets of 4 semi-structured focus groups to collect answers on research questions. The first set of groups was aimed at collecting information on patient experiences and what factors have the most impact on their care, whereas the second group focused on patients generating ideas for how to improve support.

Patients with multiple myeloma require psychological and financial support in order to get the care they need | Image credit: freshidea - stock.adobe.com

Participants were eligible if they were aged 18 years and older, living in the US, receiving their first or second line of therapy for MM, and were members of the Multiple Myeloma Patient Engagement Research Council (PERC). Patients were excluded if they were younger than 18 years or had received a stem cell transplant within 5 years after PERC initiation. All of the focus groups were conducted between September and November of 2023 and were led by a qualitative researcher. All groups consisted of 4 to 6 patients.

A total of 23 patients were included in the study, of which 17 participated in both groups, 2 participated in the first only, and 4 participated in the second only. A total of 63.2% and 66.7% were women in the first and second groups respectively, 42.1% and 42.9% were White in the first and second groups, and 47.4% and 42.9% were aged 50 to 59 years in the first and second group.

Participants established that there is a significant mental health burden for patients living with MM, including anxiety about the fear of relapse, uncertainty about future care, and treatment failure. Treatment adverse effects are frequent in patients with MM, though some of the participants claimed that they had not experienced any adverse effects or had limited adverse effects. Adverse effects included fatigue, which was noted as a particular challenge in the patients’ quality of life, and the weakening of their immune systems. The unpredictable nature of the adverse effects was also noted.

MM was also not as well known to the patients at the time of their diagnosis, which delayed the patients’ access to specific care, heightened anxiety, and a lack of understanding about their treatment. Patients also noted that there could be a delay in diagnosis because patients do not know the signs that they should look for and thinking that younger patients do not normally contract MM. The financial burden of MM is also higher due to the high costs of treatment and supportive care.

Lack of health knowledge and cultural background were the biggest factors that affected diagnosis and lack of social support, age, and disability status could affect treatment goals. Disability can reduce a patient’s ability to work, which can then affect the treatment options due to financial burden. Lack of insurance, lack of transportation, health knowledge, race and ethnicity, disability status, and age were all listed as factors that can negatively affect treatment choices, treatment initiation, and treatment adherence. Although patients said that support is needed throughout the diagnosis and treatment of MM, they noted that the initial diagnosis would be a good starting point for support to start.

Participants recommended personalized support that can include meeting with a team to help them with navigating their condition starting at the beginning of diagnosis. These teams would include psychologists, providers, social workers, and patient advocates.

Patients believed that support can be improved through training providers, allowing time for a patient to process the diagnosis, providing basic information, and helping to navigate insurance options. Patients also felt that adherence to treatment could be improved by communicating all possible adverse events, providing support for transportation, connecting patients to financial resources, providing medical slips for the patient’s employer to give an idea of how frequent treatment may be, and providing tips from other patients about how to maintain adherence.

There were a few limitations to the study, including a small sample size that may not be generalizable to all patients with MM. All participants in this study had health insurance and may be more engaged with MM due to their participation in PERC. All participants were at different stages of treatment for MM at the time of the study.

This study emphasizes the factors that patients believe to be useful in improving patient care. The information could help in establishing support groups and interventions that target the specific factors that patients require support in as they manage the condition.

References

1. Neparidze N, Godara A, Lin D, et al. Patient perspectives on social and identity factors affecting multiple myeloma care: barriers and opportunities. Healthcare. 2024;12:1587. doi:10.3390/healthcare12161587
2. Key statistics about multiple myeloma. American Cancer Society. Updated August 27, 2024. Accessed September 17, 2024. https://www.cancer.org/cancer/types/multiple-myeloma/about/key-statistics.html