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Patient, provider, and nurse preferences of patient reported outcomes (PRO) and side effect management during cancer treatment of underrepresented racial and ethnic minority groups, rural and economically disadvantaged patients: a mixed methods study

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Abstract

Purpose

The purpose of this study was to evaluate patient, oncologist and nurse perspectives on side effects and patient reported outcomes (PROs) with the question of how to optimize side effect management and PRO tools in this unique population.

Methods

This pilot study utilized a mixed method explanatory design. Patients receiving intravenous (IV) chemotherapy from June to August 2020 were surveyed about side effect burden and PRO system preferences. Providers and nurses (PN) completed complementary surveys. Semi-structured phone interviews were conducted among a subset of each group.

Results

Of 90 patient surveys collected; 51.1% minority, 35.6% rural, and 40.0% income < $30,000, 48% felt side effect management was a significant issue. All patients reported access to a communication device but 12.2% did not own a cell phone; 68% smart phone, 20% cell phone, 22% landline, 53% computer, and 39% tablet. Patients preferred a response to reported side effects within 0–3 h (73%) while only 29% of the 55 PN surveyed did (p < 0.0001). Interviews reinforced that side effect burden was a significant issue, the varied communication devices, and a PRO system could improve side effect management.

Conclusion

In a non-White, rural and low-income patient population, 87.8% of patients reported owning a cell phone. Although all agreed side effect management was a prominent issue, expectations between patients and PN differed substantially. Qualitative data echoed the above and providing concrete suggestions to inform development of a PRO program and side effect mitigation strategies among a diverse patient population.

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Data availability

The datasets generated during and/or analyzed during the current study are not publicly available due to fact that they could be linked to individual patients but are available from the corresponding author on reasonable request.

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Acknowledgments

We thank our infusion floor nurses and Lori Lelii for administering these surveys. We would like to also thank Karen Quezada and Dr. Zoneddy Dayao for the assistance and support during this project, without which this would not have been possible.

Funding

This research was partially supported by University of New Mexico Comprehensive Cancer Center Support Grant NCI P30CA118100 and the Behavioral Measurement and Population Sciences shared resource.

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Authors and Affiliations

  1. University of New Mexico Comprehensive Cancer Center, Albuquerque, NM, USA

    Bernard Tawfik, Ellen Burgess, Mikaela Kosich, Shoshana Adler Jaffe, Dolores D. Guest, Ursa Brown-Glaberman, V. Shane Pankratz & Andrew Sussman

  2. Division of Hematology and Oncology, University of New Mexico Department of Internal Medicine, Albuquerque, NM, USA

    Bernard Tawfik & Ursa Brown-Glaberman

  3. Division of Epidemiology, Biostatistics and Preventive Medicine, University of New Mexico Department of Internal Medicine, Albuquerque, NM, USA

    Dolores D. Guest & V. Shane Pankratz

  4. University of New Mexico Department of Family and Community Medicine, Albuquerque, NM, USA

    Andrew Sussman

  5. Division of Hematology/Oncology, UNM Comprehensive Cancer Center, MSC 07-4025, 1 University of New Mexico, Albuquerque, NM, 87131-0001, USA

    Bernard Tawfik

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  1. Bernard Tawfik
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by BT, EB, SAJ, and MK. The first draft of the manuscript was written by BT and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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Correspondence to Bernard Tawfik.

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Conflict of interest

The authors have no relevant financial or non-financial interests to disclose.

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of University of New Mexico Health Sciences Center’s Human Research Protections Office [UNM HRPO] (#19-562).

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Informed consent was obtained from all individual participants included in the study.

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Tawfik, B., Burgess, E., Kosich, M. et al. Patient, provider, and nurse preferences of patient reported outcomes (PRO) and side effect management during cancer treatment of underrepresented racial and ethnic minority groups, rural and economically disadvantaged patients: a mixed methods study. Cancer Causes Control 33, 1193–1205 (2022). https://doi.org/10.1007/s10552-022-01605-7

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