The Impact of Incarceration on Cancer Outcomes

Research Addressing a Public Health Crisis

The U.S. is home to approximately 25% of the world’s over ten million incarcerated population¹ and the rising incidence of cancer among these individuals now represents a public health crisis in this country.

UF Radiation Oncology Assistant Professor Oluwadamilola T. Oladeru (Lola), MD, MA, MBA (right) began her research in this area after receiving an NIH Loan Repayment Award (LRP) in 2021 while in her fourth year of residency training in radiation oncology at Massachusetts General Hospital. The aims of her research project, titled “Impact of Incarceration on Cancer Outcomes and National Stakeholder Analysis of Cancer Care Delivery in United States’ Prisons,” are to raise awareness of this crisis, report cancer screening and outcomes disparities, address challenges of palliative care in prisons, and collaborate with others for policy interventions.

Dr. Oladeru has successfully completed Aims I and Aim II of her project (below), and data from both studies are currently under analysis for manuscript preparation. In addition, she has secured grant funding from Radiation Oncology Institute for Aim IV of her project at the Federal Medical Center.

“Incarcerated people reside in geographically isolated areas of our country, are disproportionate of ethnic and racial backgrounds, often originate from and return to vulnerable socio-economic regions,” Dr. Oladeru explains. “Despite the evidence of increased burden of risk and mortality, there is a lack of U.S. population-based studies on cancer outcomes and disparities in those exposed to incarceration. This proposed research aims to address cancer disparities by examining differences in outcomes using a retrospective review of patterns of care at a large safety-net hospital, critical review of access to timely care at a federal prison level,  assessment of provider based bias and prison health leaders’ perspectives on the fragmented prison healthcare system.”

Background and Significance

While healthcare in this vulnerable population is protected under the United States’ constitution, the health status of incarcerated individuals has been described as a public-health crisis. The aging population in prison struggle with comorbid conditions including HIV/AIDs and hepatitis C which is multiple folds higher compared to those in the community.² The aging population in prison will represent over 30% of the total prison population by 2030 and as a result, the incidence of cancer is expected to rise in this population.³ Compared to community residents, those incarcerated experience accelerated aging, succumb earlier to geriatric conditions including cancer; and are described to be 10-15 years older in physiology compared to their chronological age.^4,5

Those likely to be incarcerated are often from poor and socio-economically disadvantaged communities and the majority of those released back to the community continue to bear this burden. Thus, the health of individuals in correctional facilities should be viewed in a similar lens as community health.⁶ State prisons’ mortality statistics reveal that cancer accounts for 30% of illness-related deaths in prison, making it the leading cause of death in this population. For male state prisoners, the mortality rate due to cancer was double.⁷ Data on mortality rates in federal prisons reveal that illness such as cancer is the leading cause of death in federal prisons.⁷ In-depth knowledge on the poor state of equitable health care in prison has been acquired from patient stories and litigations including lack of prompt and quality cancer care in this population. In the absence of true judicial reform, incarceration is bound to be a social determinant for cancer disparities.

In 2018, The American Society of Clinical Oncology (ASCO) published in its news platform (ASCO Post) an eye-opening article on the increasing incidence of cancer amongst incarcerated adults and widening health disparities in correctional facilities.⁸ Compounding the poor healthcare in this population is the dearth of data on cancer disparities including screening rates, treatment adherence, and health outcomes. As the field of oncology advances in the promising age of precision medicine and machine learning, we have simultaneously left behind a growing population at risk of malignancies who reside in isolated settings and parts of the country far from our comprehensive cancer centers.

 Preliminary Data

Data accessible from the very limited literature on cancer care epidemiology and prevention in this population has suggested a low screening rate compared to non-incarcerated individuals.⁹ A survey study conducted in local jails in the USA revealed a self-reported cancer prevalence of 1.1% in men and 8.3%  women.¹⁰ Analysis of cross-sectional data on chronic medical conditions obtained from a survey in prison revealed that women in US jails have a higher rate of cervical cancer compared to non-institutionalized women.¹¹ With increased access to preventive measures including immunization against HPV, cervical cancer incidence can be mitigated and thus an actionable inequity in correctional systems. Retrospective medical records review of over 300,000 men incarcerated in Texas between 2003 and 2006 revealed a seven-fold higher prevalence and four-fold higher death rate from hepatocellular carcinoma compared to the rest of the United States population. This finding was attributed to the high rate of communicable disease Hepatitis C.¹² To address cancer disparities in correctional facilities, my previous research includes a proposed framework of research and advocacy, arguing for a collective effort stemming from within the oncologic community to improve the delivery of care in this overlooked population.¹³

Specific Aims and Approach

There are nationwide efforts to understand cancer disparities based on age, gender, income, race/ethnicity, disability, sexual orientation, and other disadvantaged groups but minimal efforts in the incarcerated population. Considering the multifaceted social determinants of health in this population, the importance of cancer screening and quality cancer care cannot be overstated. The period of incarceration, which could be a social determinant of health for vulnerable populations, is a unique opportunity to intervene if researchers capture data on cancer prevention rates, adherence to screening guidelines and risk factors for cancer in this population. Herein, I propose a study aimed at describing cancer care outcomes of incarcerated patients treated at the largest safety-net hospital in New England, characterizing the present burden of care in a fragmented prison health care system through nationwide survey of key stakeholders (oncologists, and prison administrators/medical directors), and gathering data on disparities in access to care in a federal medical center (FMC, Butner North Carolina).

Specific Aim IA: To describe the patterns of cancer care among incarcerated individuals treated at Boston Medical Center over the past decade. Aim IB: To measure differences in cancer-related outcomes between incarcerated adults treated for cancer at a large safety-net hospital compared to cancer patients residing in the community between 2008 – 2018.

Hypothesis: In comparison to non-incarcerated patients treated for cancer at a large safety-net hospital (Boston Medical Center) over the past decade, a matched-cohort analysis by cancer-type would reveal that incarcerated patients during the same period have worse cancer-care quality and outcomes.

Background: There is a paucity of publication on those incarcerated with cancer including their experiences and challenges receiving multidisciplinary care, disparities in pain management, adherence to follow up guidelines while in correctional facilities, the prevalence of delayed diagnosis and policies on compassionate release. Also, data on the prevalence of cancer types in incarcerated individuals are lacking and national reports from the Bureau of Justice Statistics lack specific cancer types.

Objective: The purpose of this study is to evaluate the patterns of care and outcomes of patients incarcerated at the time of cancer treatment at Boston Medical Center. Due to the highly segregated landscape of healthcare in Boston and as the sole hospital with a contract with the Massachusetts Department of Corrections to provide radiotherapy to incarcerated individuals, BMC serves as the best cancer center for this retrospective study. Also, using an existing database of all non-incarcerated cancer patients treated at BMC’s radiation oncology department, a matched cohort can be selected for comparison with incarcerated patients based on cancer type to evaluate the impact of incarceration on overall outcomes.

Methods:  This retrospective study of patients incarcerated at the time of cancer diagnosis during a decade long period from January 2008 until December 2018 will be identified using electronic medical records from the radiation oncology department. I anticipated a sample size of approximately 300 patients during this period based on known trends. Names obtained are de-identified and secured in a confidential database for statistical analysis as per IRB regulations. Patients above the age of 18 with a cancer diagnosis while incarcerated and accessible medical records with data to calculate timing between symptom presentation, diagnosis, and initiation of treatment, tumor characteristics, treatment type, and length will be included in the study.

Analysis: Descriptive statistics for patients’ demographic data including age, race/ethnicity, education; date of diagnosis will be performed. Documented history of cancer screening (if any), stage of disease presentation, delay in diagnosis including the onset of reported symptoms, date of biopsy and treatment start date will be obtained from electronic medical records and included in the analysis. Variabilities in length of treatment compared to the standard length will be analyzed to identify challenges during treatment. Baseline characteristics between both groups (incarcerated during cancer treatment versus never incarcerated) will be compared using Fisher’s exact test or Chi-square test depending on the sample size, in addition to the Mann-Whitney U test/Wilcoxon rank sum test for continuous variables. The treatment outcomes of incarcerated patients will be compared to a control group of never-incarcerated cancer patients from BMC’s radiation oncology department institutional database. Cox multivariate analyses will be used to identify multiple and interacting factors associated with survival using hazard ratios. Logistic multivariate analyses will be performed to examine prognostic factors such as incarceration during cancer care and an odds ratio for factors associated with the delay in treatment. For incarcerated patients who received palliative cancer care, several variables will be examined including the timing of initial consult and treatment initiation, utilization/acceptance of prescribed opioids and access to supportive care medicines for symptom management will be analyzed. Odds ratio (OR) with 95% confidence interval will be computed. Statistical computations will be performed on SAS 9.3 system (SAS Institute, Cary, NC) or GraphPad prism software (version 3.0, GraphPad software). All tests will be two-sided, and a p-value less than 0.05 will be considered statistically significant.

Significance: Despite the limitations of a retrospective study, the findings are valuable in the absence of prospective data on trends of cancer and disparities in this vulnerable population. Compared to a matched cohort with similar diagnosis and radiation treatment but without a history of incarceration, barriers to quality cancer care for incarcerated patients will be identified. This study has the potential to reveal incarceration as a predictor for worse treatment outcomes and oncologic experience.

Specific Aim IIA: To assess the knowledge and perceptions of U.S. oncologists about cancer care in the incarcerated population. Aim IIB: To identify the barriers oncologists face to provide multidisciplinary and quality end-of-life care to incarcerated adults. 

Hypothesis IIA: Oncologists are unaware of the prevalence of cancer in the incarcerated population and might harbor implicit bias towards this vulnerable population. Hypothesis IIB: The fragmentation of care between state prison facilities and cancer centers, may hinder the delivery of multidisciplinary and quality end-of-life care for incarcerated patients.

Background: Prior physician surveys regarding vulnerable populations such as those of sexual minority background, suggest that physician knowledge and bias can directly impact the quality of patient care.^14-16 However, this has never been studied in oncologists treating incarcerated patients despite the challenges of multidisciplinary and palliative cancer care in a correctional setting.

Objective: This study will identify gaps in knowledge and unveil concerning attitudes of oncologists towards a growing and vulnerable patient population. This survey of oncologists is the first of its kind about this population. Evidence suggesting limited education about the needs of those incarcerated with cancer and provider-based biases will inform interventions to improve the quality of care.

Methods IIA: The research strategy will involve an electronic survey sent to oncologists (via REDCAP) nationwide from random sampling of NCI-designated cancer centers, American Society of Clinical Oncology (ASCO) and American Society for Radiation Oncology (ASTRO) directories; followed by a mailed survey to non-respondents, both of which have been shown to increase overall response rates.¹⁷ The survey questions will test the knowledge of oncologists regarding disease prevalence in this population, practice pattern for pain management, and identify implicit biases of clinicians who have never treated incarcerated patients. The target number of study participants is 245, which is a 70% response rate following dissemination to 300 medical and radiation oncologists. Funding for this study has been secured by Partners Centers of Expertise on Health Policy and Management.

Methods IIB:  Using survey method, oncologists that have treated incarcerated adults will reflect on the causes of delay to care, challenges of multidisciplinary care, describe barriers to palliative and appropriate cancer pain management and provide insights on rates of adherence to treatment/follow up care in this population. Funding for this study has been secured by Partners Centers of Expertise on Health Policy and Management.

Analysis: Statistical analysis of survey responses will include but not limited to descriptive statistics, including frequencies, percentages, means and standard deviations, and exploratory factor analysis of attitude items. I anticipate a response rate of 70% using the electronic survey method (REDCAP) to randomly selected participants and mailed surveys to non-respondents. At least a 60% response rate is needed for Journals to consider the publication of our findings. Odds ratio and ordinal regression analysis will be performed to identify factors associated with oncologists’ attitudes and biases.

Significance: The collective voice of oncologists will contextualize existing data gathered from surveys of primary care practitioners providing healthcare in prisons. Knowledge gap and implicit bias identified will be used to develop training modules for oncologists. Furthermore, disparities in quality cancer care including delayed timing of diagnosis and poor pain management from the perspective of oncologists will serve as core evidence for urgent advocacy and policy recommendations.

Specific Aim III: To characterize the burden of a fragmented prison health system from the perspective of state and federal prison administrators and medical directors.

Hypothesis III: State and Federal prison administrators and medical directors are overwhelmed with the cost of cancer care, faced with limited budgets and are pressured to work in a fragmented health care system.

Background: Prison healthcare leaders are faced with the difficult decision of whether or not to screen their population for cancer due to cost, are often limited by cost to transfer patients to non-safety net hospitals for cancer care, and have valuable insights on how to change the present correctional healthcare system.

Objective: This study will contribute to transparency of resource utilization in correctional facilities, reveal challenges of providing quality care that relies on multidisciplinary interaction and engagement of prison administrations; and identify ways to deliver care efficiently and cost-effectively.

Methods: A REDCAP survey will be distributed to all administrators nationwide through the Association of State Correctional Administrators (ASCA). Also, medical directors of state and federal prisons will be surveyed using REDCAP on a Tablet Device at the Annual Meeting (National Commission on Correctional Health Care) which sponsors a program specific to medical directors. Low response rates will be addressed by mailing surveys with pre-stamped return envelopes. The questions include description of challenges coordinating cancer care for their prison population, number of cancer patients in their correctional facilities annually, description of co-pay policy, types and location of hospitals where cancer care is provided, existing guidelines for cancer screening and rates of adherence to it, barriers to cancer screening in their correctional facilities, number of cancer patients released on medical parole in the past year, description of palliative care services within the correctional facilities and most importantly, their perceptions of a value-based cancer care delivery model for incarcerated patients. Funding for this study has been secured by Partners Centers of Expertise on Health Policy and Management.

Analysis: Survey responses will be summarized using frequencies, percentages, means, medians and standard deviations. I expect a response rate of upwards of 100% due to the popular interest in cost-effective initiatives amongst correctional health leaders and based on previous experience of my external mentor (Dr. Emily Wang) who surveyed the same group on cost and access to Hepatitis C treatment.18 Odds ratio and ordinal regression analysis will be performed to identify factors associated with their view of a value-based cancer care delivery model.

Significance: The findings of this study would be the first peer-reviewed published literature on the state of cancer care delivery through the lens of correctional health care leaders across the entire nation. It will describe the present burden of cancer care in U.S. prisons and has the potential to attract legislative attention.

Specific Aim IV: To describe the patterns of disease presentation, utilization of radiation treatment and disparities in access to care based on race/ethnicity at Federal Medical Center, Butner North Carolina over the past decade.

Hypothesis IV: Incarcerated patients treated at FMC Butner for cancer has been on the rise over the past decade, tend to present at later stages of diagnosis and experience delays to treatment. Race/Ethnicity based disparities persist in the timing of transfer to FMC Butner and access to cancer treatment.

Background: There are seven medical centers (FMC) under the Federal Bureau of Prisons, of which only Butner, North Carolina facility has the capacity of on-site radiotherapy and chemotherapy. Incarcerated cancer patients are transferred by air to FMC Butner for comprehensive cancer treatment. Patients are often on a waiting list for treatment and are not prioritized based on stage or urgency due to the lack of knowledge of the administrative staff. Upon completion of treatment at Butner, they are transferred back to their correctional facilities and often lost to follow up. This unique health delivery model in the federal prison system differs from state prisons, where care is rationed across safety-net hospitals due to limited budgets. Nonetheless, despite the comprehensive and multidisciplinary model of cancer care at the federal level in FMC Butner, there are ways to improve its cost-effectiveness, address the knowledge gap, mitigate race-based disparities and implement strategies such as telehealth for routine cancer care follow up.

Objective: The goal of this study is to characterize the burden of cancer care treatment using radiation utilization as a surrogate due to the long waiting list, in a federal prison health system and identify areas of improvement. This preliminary study will serve as the background for a longitudinal project focused on cost-savings and implementation of a value-based model of cancer care in correctional settings and policy recommendations to be proposed to the legislature.

Methods:  Following IRB approval, a retrospective review of the electronic medical records will be conducted at FMC Butner. Dr. Ron Allison is the medical director of FMC Butner’s radiation facility and will serve as an additional mentor during this aspect of the study. A research proposal has been submitted to a non-profit grant foundation with Dr. Ron Allison and Dr. Charles Thomas as co-mentors. Patient demographics including age, race/ethnicity, education; date of diagnosis, request for transfer to FMC Butner, arrival date, clinicopathologic and tumor variables including histology, grade, and treatment information will be obtained from electronic medical records of cancer patients treated at FMC Butner.

Analysis: Descriptive statistics will be computed to describe patient, tumor and treatment characteristics. Frequencies will be calculated and the Chi-square test will be used to examine differences in categorical variables by stage of disease presentation (stratified by histology). For continuous variables, results will be presented as median (interquartile range, IQR), non-parametric Wilcoxon-Mann-Whitney will be used to assess for the difference in distribution by time to access care. Logistic regression modeling will be used to compute crude and adjusted odds of earlier access to treatment by variables including patient’s age, race and ethnicity. Odds ratio (OR) with 95% confidence interval will be calculated. Statistical computations will be performed on SAS 9.3 system (SAS Institute, Cary, NC) or GraphPad prism software (version 3.0, GraphPad software). All tests will be two-sided, and a p-value less than 0.05 will be considered statistically significant.

Significance: Identifying disparities and understanding the barriers to quality care in correctional facilities is important for the implementation of a cost-effective health care system. By focusing on a federal prison with an existing centralized multidisciplinary cancer care system, our findings can serve as a pilot for future interventions to reduce disparities in correctional settings.

Outcomes and Impact

“The outcomes of this study will have a positive impact and directly communicate health policy strategies to legislative bodies governing correctional facilities about the current state of cancer care using scientific evidence that has never been shown before,” states Dr. Oladeru. “It will inform future studies on the best model that promotes cost-savings and quality cancer care. I anticipate that findings from this funded research would be published in top journals and I intend to present my findings at national meetings. The success of these studies would add to my preliminary research background required for future NIH grants. The knowledge produced by this proposal will be a solid foundation for a promising career in health services research and future health policy leadership role to serve the most vulnerable populations in our society.”

“More importantly, in the next decade of significant advancements in personalized medicine for cancer patients in the community, the world will not only applaud us for the broken glass ceilings in drug discovery, but they will also judge our silence on the growing injustice and profound health disparities in an overlooked population. I hope my research will raise awareness among the present generation of oncologists and inspire prison health policy initiatives.”

References:

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