Access Matters: Studying Disparities in Health Outcomes for Multiple Myeloma

Multiple Myeloma

Mar 19

This publication was approved and written in close collaboration with Dr. Heinz Ludwig.

Dr. Heinz Ludwig is director of the Wilhelminen Cancer Research Institute in Vienna, Austria. Dr. Ludwig is a featured expert in our health equity-focused Pro Hub that lists inclusive global healthcare professionals committed to advancing inclusive research and providing the highest quality care to all patients.

These articles are written by Diverse Health Hub to summarize complex medical research in order to facilitate deeper understanding. Diverse Health Hub publications are not intended to persuade its readers. We present information to create in-depth conversations that encourage patients to critically think and decide for themselves.

New research from Heinz Ludwig, MD et al explores the global interrelations between multiple myeloma mortality and countries’ economic resources, patient empowerment, and health access and quality. The study is intended to inform about the associations between these factors, and to improve diagnosis, management, and outcome of patients globally.

Multiple myeloma accounts for 10 percent of all hematological malignancies, and is of particular clinical interest due to the significant advances in medical treatment options available.

The data from this study show a “substantial worldwide variation in incidence and mortality that is mainly due … to disparities in access to and quality of health care, a parameter strongly related to the economic development of individual countries.”

Why the Disparity in Myeloma Outcomes?

Health outcome disparities exist for numerous varied and overlapping reasons that are difficult to separate and quantify. This study identifies and explores the correlations between seven datasets for multiple countries across the world:

Incidence of multiple myeloma
Mortality of multiple myeloma
GDP per capita
HAQ (Healthcare Access and Quality index, see glossary below)
Healthcare expenditures
Patient empowerment
Access to cancer drugs

Analysis of the observations from these datasets allow the study to suggest that Access to Quality Healthcare — and all that entails — is a strong determining factor for multiple myeloma survival rate.

What Is Access to Quality Healthcare?

In the context of the study, access to and quality of healthcare can be summarized by three points:

Accurate and timely diagnosis of multiple myeloma
Availability of novel treatment options for patients with multiple myeloma
Direct participation of patients in their care plan (“Empowerment”)

Failure to Diagnose Multiple Myeloma

The age-standardized global incidence rates of multiple myeloma vary significantly between 0.1/100000 to 5.3/100000.

Age, gender, ethnic background, phenotype, obesity, lifestyle, and environmental variables are established risk factors for Multiple Myeloma. While these variables can account for some of the reported incidence disparities, the missing diagnosis of multiple myeloma in several regions “likely accounts for most of the substantial differences.” Furthermore,

This also suggests that the presently available incidence and mortality figures for multiple myeloma grossly underestimate the global burden of the disease.

This study compares data from countries that report low multiple myeloma incident rates with available data about the same countries’ health expenditures, GDP per capita, and HAQ indices. A picture emerges from the data: countries that have low incidence rates, but do not invest in healthcare infrastructure, whose people are poor (low GDP) and have poor access and quality of healthcare (low HAQ), are likely failing to diagnose properly.

Early diagnosis of multiple myeloma depends on laboratory tests, imaging, and professional expertise which are all factors of the HAQ index. HAQ index correlates with both GDP per capita and a country’s healthcare expenditures. In short, “Access” means people have regular, clinical blood work performed and monitored. And “Quality” means knowing what to look for: blood work is professionally analyzed with an informed understanding of the markers for multiple myeloma. A country might have low incidence rates simply because the disease is not accurately identified.

Access to Novel Myeloma Treatment

According to the data, Multiple Myeloma survival rates are strongly correlated with both HAQ and access to cancer drugs. This relationship is obvious and further evidenced by the international efforts to improve global healthcare quality. Less obvious is the fact that for the majority of Multiple Myeloma patients, “most or all of the recently introduced novel drugs are not available…. This also applies to several European countries with limited or no access to novel drugs.”

Specifically mentioned:

Notably, the availability of novel drugs correlates with GDP per capita, indicating that there is another disparity in access: high cost of these drugs means there may not be a market in countries whose populations cannot afford them. The presence of these treatment options yet their inaccessibility marks a gap in real world practice that results in unnecessary suffering and increased mortality.

Patient Empowerment

There is no exact quantified metric for the concept of patient empowerment. For the purposes of the study, patient empowerment is the measurement of a person’s ability to acquire significant knowledge about their disease (presumably online). This enables patients to do two things:

Cooperate with their caregivers and to make informed decisions about diagnostic procedures and treatment selections
Gain expertise in the recognition and management of critical situations, thus reducing adverse outcomes

According to the data, patients sought more information about Multiple Myeloma in countries with higher incidence rates. As mentioned earlier, the higher incidence rate is likely due to a superior diagnosis rate, which correlates with better HAQ index. Correspondingly, more empowered patients tend to experience better treatment outcomes.

The study used web visits to the IMF Myeloma site as a proxy for patient empowerment. It was beyond the scope of the study to determine qualitative metrics for patient empowerment.

Conclusion

The study findings demonstrate a significant disparity in multiple myeloma incidence and outcome figures. Myeloma often remains underdiagnosed and undertreated in many countries. The study also highlights the importance of a country’s economic resources and healthcare expenditure as they pertain to both access and quality of care. Furthermore, the availability of novel drugs for treatment options and myeloma patients’ education both improve health outcomes.

Glossary

Healthcare Access and Quality measurement - Measuring performance on the Healthcare Access and Quality Index for 195 countries and territories and selected subnational locations: a systematic analysis from the Global Burden of Disease Study 2016 - PubMed (nih.gov)

1-MIR = the Mortality to Incidence Complement Ratio used often in the study is a proxy for “death due to Myeloma.” Since it’s essentially impossible to get cause of death data to match Myeloma diagnosis data 1:1, the research must figure out a way to represent the likelihood that someone who got myeloma actually passed from it within a 5-year period. Because this factor depends on data reported by the countries’ healthcare systems, it is subject to the HAQ index of the reporting country. Therefore, the statistic can possibly underestimate the “real” mortality rate due to reliance on potentially poor quality data. This is discussed in detail in the paper, but is worth pointing out in summation.

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