Dyadic Perspectives on Multiple Myeloma-Related Healthcare Access Barriers

In this video, Shakira J. Grant, MBBS, discusses the abstract "'...Paying to be a Patient in the Hospital and the Parking Lot': Dyadic Perspectives on Multiple Myeloma-Related Healthcare Access Barriers," presented at ASH 2022.

Transcript:

Hi, I'm Dr. Shakira Grant from the University of North Carolina at Chapel Hill and I'm an assistant professor of medicine there and a geriatric hematologist, oncologist. I actually focus my research on the intersection of social disparities and age and looking at how these two factors come together to really influence outcomes for older adults with multiple myeloma, and during this year's annual meeting I presented an abstract which was looking at health care access barriers for older adults with myeloma, and their informal caregivers and so the background for this study is really based on the existing disparities within the multiple myeloma population and that we see that Black patients are twice as likely to get this disease and remain twice as likely to die from this disease, and they also have continued poor clinical outcomes. A lot of this is really driven by differential access to care, in so much that Black patients tend not to have the same equal opportunities to have treatments such as stem cell transplantation, other novel therapies available to them.

So, with this background knowledge, we really wanted to set out to understand much more deeper what are the barriers that patients and caregivers in North Carolina are experiencing with their multiple myeloma, and to do this, we designed a qualitative study where we interviewed patients and their caregivers together and during the interview we asked questions around what challenges they had in terms of accessing the cancer center, what concerns they had about traveling for their treatments, and we asked a whole range of topics around the social determinants of health. 

After we completed our interview, we had our transcripts developed, and these were all professionally transcribed audio recordings, and from that we were able to use a systematic approach known as Sort and Sift, Think and Shift, which is an iterative approach to data analysis allowing us to really dive into our data to understand its meaning using diagrams and memos and looking within each transcript and then across each transcript to summarize the findings. In terms of our key findings we identified that patients, and again, this was largely an older cohort, we enrolled primarily, 50% of our cohort were actually Black patients, and just about 50% identified as white, and this was a self-identified race and we made that conscious decision before embarking on this study, because we know of the challenges with enrolling Black participants so we really wanted to have diverse perspectives represented in our sample. 

From our findings we identified challenges which include delays in the diagnosis, delayed referrals to a hematologist and an oncologist, there were also financial barriers that patients experienced, and there were challenges with scheduling and their appointments and this really centered around the distance that patients needed to travel along with their caregivers to the center to get care. One of the things that I should mention is that this was a single center study conducted at the University of North Carolina at Chapel Hill, and so our center is considered as the state's hospital and really represents or provides care for 100 counties, all 100 counties of North Carolina, and so in terms of our key things that I wanted to really highlight here are the findings about delayed diagnosis and delayed referrals to a specialist.

We heard themes such as patients being told by primary specialists or primary care providers that, "It's just getting older," when they presented with their symptoms, so symptoms were often dismissed by providers, chalked up to just getting older, or patients oftentimes needed to be referred to other specialists to try to evaluate some of these things, such as kidney dysfunction, anemia, and looking at things like going to other specialists like nephrologists and gastroenterologists.

In terms of other things that were really coming out in our data, we also collected socio-demographics, which included things like zip code, which we linked to an area level measure known as social vulnerability index and we found that patients who lived in counties in North Carolina where there was the greatest social vulnerability, that they were more likely to be reporting or discussing concerns about accessibility and also financial concerns.

So in terms of our next steps from this study, we've recognized that there are several points in the access care model where patients may be having challenges in getting in for that initial care. What we really need to focus on is the upstream factors such as the delays that patients are experiencing with getting the first diagnosis of multiple myeloma. Some strategies, which we ask patients to provide us with, some recommendations about what advice they would give to patients or providers about myeloma and their experiences were really centered around education and education, not only targeting patients, but really thinking about education targeting providers also, especially those who practice in rural communities, and this doesn't have to be limited to just oncologists but really should be limited to a broad range of specialists, especially primary care providers, who are likely to be the first contact for these patients when they present.

The other efforts are thinking about the financial challenges, so once patients actually get that diagnosis of multiple myeloma, many express concerns about the financial burden which really stemmed from difficulty in paying for their medications, the need to travel, and to pay for parking, to pay for gas, so thinking about things like medication assistance programs, also making parking more affordable for these patients, could really go a long way.

I think in summary, for us these findings really illuminate that the challenges that patients with multiple myeloma experience, it also shows that there are still existing disparities in terms of the access barriers that patients and their caregivers are reporting, and it tells us that we really need to be focusing our efforts on patients who identify as Black, in addition to those who face high social vulnerability, meaning those who live in neighborhoods that have the greatest amount of poverty or face the most socioeconomic disadvantage.

Source: Erisnor G, Mills J, Mihas P, et al. "...Paying to be a Patient in the Hospital and the Parking Lot": Dyadic Perspectives on Multiple Myeloma-Related Healthcare Access Barriers. Presented at the ASH Annual Meeting & Exposition; December 10-13, 2022; New Orleans, LA, and virtual. Abstract 172.