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How cancer programs identify and address the financial burdens of rural cancer patients

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Abstract

Purpose

Financial toxicity is associated with negative patient outcomes, and rural populations are disproportionately affected by the high costs of cancer care compared to urban populations. Our objective was to (1) understand cancer programs’ perceptions of rural–urban differences in cancer patients’ experiences of financial hardship, (2) evaluate the resources available to cancer patients across the rural–urban continuum, and (3) determine how rural and urban health care teams assess and address financial distress in cancer patients.

Methods

Seven research teams within the Cancer Prevention and Research Control Network conducted semi-structured interviews with cancer program staff who have a role in connecting cancer patients with financial assistance services in both rural and urban counties. Interviews were audio-recorded and transcribed. We identified themes using descriptive content and thematic analysis.

Results

We interviewed 35 staffs across 29 cancer care programs in seven states, with roughly half of respondents from programs in rural counties. Participants identified differences in rural and urban patients’ experiences of financial hardship related to distance required to travel for treatment, underinsurance, and low socioeconomic status. Insufficient staffing was an identified barrier to addressing rural and urban patients’ financial concerns.

Conclusions

Improved financial navigation services could mitigate the effects of financial toxicity experienced by cancer patients, particularly rural patients, throughout treatment and survivorship. Future research is needed to improve how cancer programs assess financial hardship in patients and to expand financial navigation services to better serve rural cancer patients.

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Data availability

Data available on request due to privacy/ethical restrictions.

Code availability

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Funding

This study was funded by the Health Promotion and Disease Prevention Research Center supported by Cooperative Agreement Numbers (U48-DP005017, U48-DP005053, U48-DP005014, U48-DP005030, U48-DP005013, U48-DP005006, U48-DP005021) from the Centers for Disease Control and Prevention. CHAI Core is funded by the UNC Gillings School of Global Public Health Nutrition Obesity Research Center through NIH (DK056350) and the UNC Lineberger Comprehensive Cancer Center through NCI (P30-CA16086). Victoria Petermann is supported by the Rita and Alex Hillman Foundation and the UNC Lineberger Cancer Control Education Program T32 (T32CA057726-27). Dr. Melinda Davis’s time was supported in part by a Cancer Prevention, Control, Behavioral Sciences, and Populations Sciences Career Development Award from the National Cancer Institute (K07CA211971). The findings and conclusions in this manuscript are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention, the Hillman Foundation, or the National Institutes of Health.

Author information

Authors and Affiliations

  1. The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Victoria Petermann, Catherine Rohweder, Randall Teal, Maihan Vu & Stephanie B. Wheeler

  2. University of South Carolina, Columbia, SC, USA

    Whitney E. Zahnd, Jan M. Eberth & Jessica Lee

  3. University of Kentucky, Lexington, KY, USA

    Robin C. Vanderpool, Lindsay Stradtman & Jean Edward

  4. Case Western Reserve University, Cleveland, OH, USA

    Elizabeth Frost, Erika Trapl & Sarah Koopman Gonzalez

  5. University of Washington, Seattle, WA, USA

    Thuy Vu, Linda K. Ko & Allison Cole

  6. Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    Linda K. Ko

  7. Oregon Health & Science University, Portland, OR, USA

    Paige E. Farris, Jackilen Shannon & Melinda Davis

  8. University of Iowa, Iowa City, IA, USA

    Natoshia Askelson & Laura Seegmiller

  9. Centers for Disease Control and Prevention, Atlanta, GA, USA

    Arica White

Authors
  1. Victoria Petermann
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  2. Whitney E. Zahnd
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  7. Maihan Vu
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  8. Lindsay Stradtman
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  9. Elizabeth Frost
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  10. Erika Trapl
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  11. Sarah Koopman Gonzalez
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  13. Linda K. Ko
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  14. Allison Cole
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  17. Jessica Lee
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  20. Arica White
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  21. Jean Edward
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  22. Melinda Davis
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  23. Stephanie B. Wheeler
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Contributions

Victoria Petermann, Whitney E. Zahnd, Robin C. Vanderpool, Jan M. Eberth, Catherine Rohweder, Lindsay Stradtman, Elizabeth Frost, Erika Trapl, Sarah Koopman Gonzalez, Thuy Vu, Linda K. Ko, Allison Cole, Paige E. Farris, Jackilen Shannon, Jessica Lee, Natoshia Askelson, Laura Seegmiller, Arica White, Jean Edward, Melinda Davis, and Stephanie B. Wheeler all participated in the conceptualization, design, and execution of the qualitative study. Randall Teal and Maihan Vu conducted the qualitative analysis and collaborated in drafting the results. Victoria Petermann and Whitney E. Zahnd collaborated on drafting the manuscript, and all other authors read and provided input on multiple versions of the manuscript. All authors read and provided input on multiple versions of the manuscript.

Corresponding author

Correspondence to Victoria Petermann.

Ethics declarations

Ethics approval and consent to participate

All procedures performed in this study were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This study was approved by the Institutional Review Board at Oregon Health & Science University and determined exempt by the Institutional Review Boards at the University of North Carolina at Chapel Hill, University of Washington, University of Kentucky, University of Iowa, University of South Carolina, Case Western University. All participants were given an information sheet detailing the purpose of the study, study contact information, their rights as research participants, that all data will be analyzed and presented in aggregate, and any identifying information will be removed from transcripts and quotes.

Consent for publication

Prior to starting the interviews, all participants were given an information sheet and informed that all data will be analyzed and presented in aggregate, and any identifying information will be removed from transcripts and quotes used in publication.

Conflict of interest

Stephanie B. Wheeler has received grant funding paid to her institution from Pfizer Foundation in the past 3 years. All other authors report no conflict of interests.

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Appendices

Appendix A. Semi-structured interview guide

The development of the interview guide was informed by reviews of the literature and workgroup members’ clinical and research expertise in cancer-related financial hardship.

CPCRN Rural Cancer Workgroup Interview Guide

Version 9.22.18

I. Overview of Organization and Role

  1. 1.

    Tell me a little bit about [name of hospital/health system/clinic] and your role here.

  2. 2.

    What (if any) role do you have in assisting patients and families who are concerned about the cost of their cancer care?

    [Associated costs may include direct medical expenses like co-pays/co-insurance/deductibles and medication costs, as well as non-medical expenses like transportation, housing, childcare, eldercare, and loss of employment.]

II. Patient Experiences and Financial Resources

  1. 3.

    How do you know if your patients have financial concerns?

  2. 4.

    In your experience, how does cancer-related financial distress affect patients? Please share any specific patient examples.

  3. 5.

    Within your organization, what structures/resources/personnel are in place to help patients and their families when they may have concerns about the costs of cancer care?

  4. 6.

    Outside of your organization, what resources, both formal and informal, are you aware of and would recommend to patients with financial concerns?

  5. 7.

    How do you communicate with members of the care team when patients have financial difficulties related to their cancer treatment?

III. Differences between rural and urban cancer patients

  1. 8.

    What, if any, financial burden differences have you noticed between patients from rural areas and those from urban areas?

  2. 9.

    What specific programs/resources, if any, are available to patients who live in rural areas and/or must travel long distances to your hospital/clinic?

  3. 10.

    What obstacles/challenges do rural-residing patients experience in trying to access these resources?

  4. 11.

    What gaps do you see in existing resources available to rural cancer patients?

IV. Conclusion

  1. 12.

    What suggestions do you have for improving the process of addressing cancer patients’ financial barriers to cancer care?

  2. 13.

    What do you consider to be the most immediate need and area for intervening in your community? (i.e., intervention topics)

  3. 14.

    Is there anyone else within [name of hospital, clinic, health system] that you feel we should talk to about the topics we covered today? [If yes, please obtain their name and contact information.]

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Petermann, V., Zahnd, W.E., Vanderpool, R.C. et al. How cancer programs identify and address the financial burdens of rural cancer patients. Support Care Cancer 30, 2047–2058 (2022). https://doi.org/10.1007/s00520-021-06577-z

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