Financial Burden in Patients With Health Disparities (2022-2023)


There are significant financial burdens placed on patients and their caregivers suffering from chronic and complex medical conditions. The growing body of academic literature primarily focuses on cancer patients and the subsequent adverse effects of financial hardship due to the unchecked rising costs of cancer care. 

Treatment-related financial strain of cancer care for patients and their family members has been coined “financial toxicity.” This can impact multiple domains of life including behavioral, psychosocial and material. It can take the form of both direct costs and indirect costs. 

Despite the focus in the cancer population, there remains little evidence about the prevalence and impact of financial toxicity in other vulnerable patients and caregivers, such as those with severe mental health disorders or dementia, and sexual and gender minority older adults (i.e., older adults whose gender identity and/or sexual orientation differ from traditional societal, cultural or physiological norms). There is mounting evidence that these populations face limited access to healthcare, employment discrimination, income inequality and higher burdens of disease.

Project Description

This project team will use a mixed-method approach to comprehensively characterize financial toxicity among health disparity populations of sexual and gender minority older adults, people living with dementia, people with mental health conditions and their associated caregivers. The first group on which the team will focus will be the dementia population and their caregivers. The project will prioritize wide dissemination of findings to empower the voice of these groups of older individuals and vulnerable populations and will inform health policy initiatives to improve the quality of life and care.

The project has three primary aims:

  1. Adapt a survey capturing financial toxicity in health disparity populations and their caregivers 
  2. Characterize the degree and magnitude of different components of financial toxicity in older adult health disparity populations 
  3. Empower the voice of older minority populations through imagery and critical reflection on their perceptions and experiences regarding financial hardship related to healthcare costs.

Each aim corresponds to one of three phases:

  1. Survey and Cost Diaries Development: Team members will adapt a survey using elements from prior validated instruments including the Comprehensive Score for Financial Toxicity, Institute for Medical Technology Assessment Productivity Cost Questionnaire and Cost of Care Index. Team members will create cost “diaries” that will allow estimations of monthly out-of-pocket costs related to medication costs, insurance premiums, travels, alternative diets, childcare and medical devices/equipment. 
  2. Survey Administration and Data Analysis: The team will partner with community organizations to recruit eligible participants. Surveys will be administered to eligible participants and descriptive statistics will summarize sociodemographic, out of pocket expenses and cost-coping strategies, as well as a generalized linear model to assess the relationship between sociodemographic and financial burden. 
  3. Photovoice: To empower older adult minority voices, the team will use photovoice, a qualitative, participatory research method that combines photography, verbal narratives and critical reflection to capture aspects of their environment and experiences with a certain topic. Separate participants in this phase will be engaged throughout the research process. The research team and participants will work together to identify common themes in the image and narrative data, which will then be shared with relevant stakeholders, the public and policymakers.

Anticipated Outputs

Manuscript; abstracts; poster presentations; public photovoice exhibit

Student Opportunities

Ideally, this project team will be comprised of 3 graduate students and 4 undergraduate students with interests in statistics, epidemiology, econometrics, behavioral decision making, psychology, organizational management and/or survey design. Business, public policy, nursing and medical students are welcome to apply. Selected team members will ideally have knowledge in one common statistical programming language (R or Stata), REDCap or Qualtrics and familiarity with mixed methods research. Additionally, individuals should be interested in and have some prior exposure to creation and administration of surveys.

Team members will have the opportunity to engage with qualitative methods and gain knowledge in regulatory document preparation and literature reviews. Additionally, students will learn about mapping research themes with photovoice and working with patients on photography to highlight findings.

Graduate students will lead subgroups and research pods, and will be critical in survey instrument adaption and analyzing data to characterize financial toxicity in this population. 

The team will work in subgroups based on student interests, and the entire team will meet weekly via Zoom to discuss and guide progress. In Fall 2022, the team will meet on Tuesdays from 4:00-5:00 p.m. Full team meetings will monitor project milestones and serve as an educational forum for students. A didactic portion of these meetings will emphasize quick chalk talk lessons on qualitative/quantitative research methodology, practice presenting scientific data and tutoring on statistical programming. Individual meetings with each of the working subgroups will address more granular topics.

Vishnukamal Golla and Melissa Harris will be the project managers. 


Summer 2022 – Spring 2023

  • Summer 2022 (optional): Seek IRB approval; complete CITI training and ancillary research requirements; designate subgroups; start survey adaption 
  • Fall 2022: Administer survey; commence data collection and data analysis
  • Spring 2023: Submit abstracts; organize photovoice gallery


Academic credit available for fall and spring semesters; summer funding available


Image: Interventional Radiology, by NIH Clinical Center, licensed under CC BY 2.0

Image: Interventional Radiology.

Team Leaders

  • Ian Berger, School of Medicine-Surgery: Urology
  • Vishnukamal Golla, School of Medicine-Surgery: Urology
  • Melissa Harris, School of Nursing

/yfaculty/staff Team Members

  • Matthew Maciejewski, School of Medicine-Population Health Sciences
  • Bryce Reeve, School of Medicine-Population Health Sciences
  • Charles Scales, School of Medicine-Surgery: Urology