by Mona Jhaveri - June 3, 2021

 

Disparities in Access to Cancer Clinical Trials

Cancer doesn’t discriminate. It can affect people of any age, race, ethnicity, religion or social status. That said, proper cancer care is NOT equally accessible for all people. Therefore outcomes of those battling cancer can drastically vary based on social structures and practices regardless of one’s particular demographic. Factors that are normally tied to poor cancer outcomes are:

  • Poverty
  • Discrimination
  • Racism
  • Low-quality education and housing
  • Inadequately paying jobs
  • Lack of access to affordable healthy foods

Health disparities occur when different groups of people receive a varying standard of care because of their income levels, education levels, gender identity, age, race or ethnicity, disability status, and similar.

Health disparities in cancer care affect every aspect of it – prevention, screening, diagnosis, treatment, follow-up care, and post-treatment surveillance screening. These disparities are also systemic in the clinical trials process and represent a huge barrier to the study of drug safety and efficacy.

What is a clinical trial for cancer treatment?

Cancer research is focused on discovering new therapeutic approaches for different types of malignancies. The path to the development of new cancer drugs is long and arduous. It hinges on clinical trials as a crucial step in the process – the final step in evaluating the efficacy of a new drug.

Oncology clinical trials aim to test how innovative approaches to treating cancer compare to  treatments that already exist for that cancer type or stage. Clinical trials are generally performed on patients at various stages of cancer, for various types of cancer. That said, most novel treatments are tested for safety in patients with advanced cancer.

Why are cancer clinical trials necessary?

Clinical trials for cancer directly impact survival outcomes which is why these studies are absolutely required before any drug is market approved. For example, trials for children younger than 15 have historically high participation rates (over 50%, compared to less than 5% for trials in adult cancer patients). As a direct result of this, mortality rates for childhood cancer patients have been on the decline since the 1970s. The average mortality rate has dropped by around 2.6% every year from 1975 to 1995 for cancer patients younger than 20. Today, more cancer treatments have successful outcomes because of dedicated clinical trials that resulted in clear survival outcomes. Hence, clinical trials are vital to making progress in the fight against cancer.

SES Disparities in Access to Clinical Trials

Studies have found a direct correlation between higher socioeconomic status (SES) levels and increased participation in clinical trials. In clinical trials for breast cancer conducted between 1987 and 2003, only 12% of 6166 participants did not have a high school diploma. Another US-based study found that only 5% of clinical trial participants have not graduated from high school, while 24% had postgraduate degrees. Furthermore, only 11% had less than $25 000 in yearly income. Overall, there is a sharp correlation between education levels and clinical trial participation. The lack of socioeconomic diversity presents a real problem for both drug developers who seek to better understand the safety and efficacy parameters of their products, and for the diverse public who are affected with disease where advantages in treatment options may be limited.

Patient Factors

Knowledge, culture, and beliefs

One of the most common barriers to patients accessing clinical trials is the lack of education about what cancer is, and why clinical trials are important to fighting disease, not only for the individual, but for society at large. Certainly aspects of culture and belief systems play a role in treatment decision making as well. There are five elements that are crucial to influencing a patient’s decision to participate in trials:

  • Lack of knowledge
  • Negative beliefs about trials
  • Influence of faith
  • Influence of health care providers
  • Recommendations or experiences in clinical trial participation by relatives or friends

Overall Health

Overall fitness and health standards are normally (but not always) a requisite for clinical trial participation for cancer patients. Poor pre-cancer health can negatively impact a patient’s probability of being recruited. Some of the health criteria include normal measures of organ function.

Those from underserved communities too often fail to attend cancer screening programs and therefore are typically diagnosed at later stages of the disease, when the disease is incurable. Late stage diagnosis coupled with comorbidities can disqualify patients from participation in clinical trials. Hence clinical trials where underserved communities are properly represented are few and far between.

Language Issues

A significant barrier for low income/low socially economic individuals is the language. For example, patient consent forms are not typically translated in multiple languages. Also, clinical trial forms consistently fail readability guidelines and are unnecessarily complex, especially for patients with low reading levels. It’s unfortunate that it requires high educational backgrounds  to fully understand what a patient has to sign before entering a trial. This is a contributing factor to lack of diversity in clinical trial programs.

Financial Barriers

Insurance coverage of participation in clinical trials is always a big question mark. If the patient is uninsured, it remains unclear if their care will be covered and to what extent.

So too, insured patients may also be reluctant to participate in clinical trials due to a variety of “hidden” costs such as traveling to and from the clinic if they are from a rural community, or loss of income due to missed work, or need for extra childcare for the trial duration.

This is exacerbated if insurance programs limit cancer care to specific local hospitals which aren’t teaching or university hospitals and may not have any clinical research programs available. Suffice to say, major cancer sites are not equally available for all and therefore clinical trials are also not equally accessible.

Healthcare Provider Factors

For patients with cancer to be considered for a clinical trial, their referring clinician must consider them viable candidates. There are several factors that could disqualify a patient from participating in a clinical trial. In these instances, the provider may refrain from discussing clinical trial participation with the patient. That said, there are many other real scenarios where clinicals fail to provide clinical trial information to patients.  Some of these reasons include:

  • The patient has multiple comorbidities incompatible with trial involvement.
  • The clinician is unaware that there are applicable ongoing studies for the patient.
  • The clinician may make conscious or subconscious decisions about the patient’s willingness to participate based on their socioeconomic characteristics.
  • The clinician may not have enough time to adequately explain and counsel the patient about the trial, subsequently deciding only to mention them to their more educated patients.

Taking all of this into account, it is clear how physicians, surgeons, oncology professionals, or initial treating specialists have an influential role in cancer patient participation in clinical trials. Strategies to overcome referrer barriers are complex and often challenging to execute, but need to involve clinician education about the available trials as well as methods to improve communication between the clinician and patient.

Conclusion

Clinical trials are invaluable for making advances in cancer care. Without them, science wouldn’t accurately compare and evaluate which treatment options are effective and which should be abandoned.

Unfortunately, SES disparities are evident concerning cancer clinical trial access. Patients of low SES (low income and education levels) are less likely to be referred to a clinical trial and more likely to refuse participation due to various reasons. These reasons are tied mainly to their lack of knowledge and accurate information about clinical trials as well as financial concerns. Overcomplicated language of the information and consent forms is also a significant factor as to why low-SES individuals have trouble understanding the importance and opportunities of trials for cancer treatments.

If the war on cancer is to progress in the right direction, participation in cancer clinical trials for a diverse set of adults needs to become the norm. This includes patients with low SES who can benefit from novel scientific breakthroughs by taking part in cutting-edge research. Everyone should have the right to equitable access to high-quality cancer care. This is not the case today and sectors of society suffer as a consequence.

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