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The association between cancer care coordination and quality of life is stronger for breast cancer patients with lower health literacy: A Greater Plains Collaborative study

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Abstract

Purpose

Health literacy (HL) and cancer care coordination (CCC) were examined for their relationship to quality of life (QOL) among breast cancer survivors. CCC was hypothesized to have a stronger relationship to QOL for women with lower HL.

Methods

Women (N = 1138) who had completed treatment for Stage 0–III, ductal carcinoma breast cancer between January 2013 and May 2014 at one of eight large medical centers responded to a mailed questionnaire. Responses to questions about survivorship care planning and presence of professional care coordinator were combined to form an index of CCC. An index of HL was also derived. QOL was measured using the Functional Assessment of Cancer Therapy-Breast (FACT-B) scales.

Results

74.3% (N = 845) of patients reported having a health professional coordinate their care during treatment and 78.8% (N = 897) reported receiving survivorship care planning. CCC was classified as none, partial, or high for 7.1%, 32.7%, and 60.2% of the patients, respectively. Except for emotional well-being, the interaction between HL and CCC was significant for all QOL domains (p < .05); the effect of CCC on FACT-B scores was largest for people with lower HL. For the 39.8% of patients with less than high CCC, 111 (27.3%) had a level of HL associated with clinically meaningful lower QOL.

Conclusions

The association between CCC and later QOL is strongest for people who have lower HL. Prioritizing care coordination for patients with lower health literacy may be an effective strategy in a setting of limited resources.

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Acknowledgments

The authors would like to thank Julie McGregor, Amy Godecker, Kathy Peck, and Sarah Esmond for their assistance with data collection and study conduct; the Share Thoughts on Breast Cancer patient advocates who helped develop the study questionnaire including Cheryl Jernigan and Jody Rock; the study site coordinators and project managers who conducted the study mailings including Teresa Bosler, Michele Coady, Mack Dressler, Sarah Esmond, Bret Gardner, Amy Godecker, Brian Gryzlak, Julie McGregor, Deb Multerer, Char Napurski, Kathy Peck, Nick Rudzianski, Sabrina Uppal, Xiao Zhang, and Brittany Zschoche; investigators overseeing data collection including Drs. Anne Berger, Anne Blaes, Elizabeth Chrischilles, Lindsay Cowell, Barbara Haley, Jennifer Klemp, Ingrid Lizarraga, Joan Neuner, Adedayo Onitilo, Amalie Ramirez, and Priyanka Sharma; and the Greater Plains Collaborative informatics team who integrated tumor registry data and selected the study samples including Bhargav Adagarla, Daniel Connolly, Tamara McMahon, Glenn Bushee, Supreet Kathpalia, Jim McClay, Eneida Mendonca, Tom Mish, Susan Morrison, Phillip Reeder, Nicholas Smith, and Laurel Verhagen.

Funding

This work was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CDRN-1306-04631) for the development of the national patient-centered clinical research network, known as PCORnet. It was also supported by NIH grants UL1TR002537 for the University of Iowa Institute for Clinical and Translational Science and P30 CA086862 for the Holden Comprehensive Cancer Center (Chrischilles, McDowell, Mott); and NIH grants UL1TR000427 for the University of Wisconsin Institute of Clinical and Translational Research and P30 CA014520 for the University of Wisconsin Carbone Cancer Center (Trentham-Dietz).

Author information

Authors and Affiliations

  1. 5240 MERF, Holden Comprehensive Cancer Center, University of Iowa, Iowa City, IA, 52242, USA

    Bradley D. McDowell

  2. Department of Medicine, University of Kansas Medical Center and University of Kansas Cancer Center, Kansas City, KS, USA

    Jennifer Klemp

  3. Division of Hematology, Oncology and Transplantation, 420 Delaware St SE, MMC 480, Minneapolis, MN, 55455, USA

    Anne Blaes

  4. Community and Health Systems, Nursing W433, Indiana University, Indianapolis, IN, 47405, USA

    Andrea A. Cohee

  5. Carbone Cancer Center and Department of Population Health Sciences, School of Medicine and Public Health, University of Wisconsin–Madison, 610 Walnut St., WARF Room 307, Madison, WI, 53726, USA

    Amy Trentham-Dietz

  6. Division of Hematology, Oncology and Transplantation, Medical College of Wisconsin, Watertown Plank Road, 4th Fl Cancer Center, Milwaukee, WI, 53226, USA

    Sailaja Kamaraju

  7. Science of Nursing Care, Nursing W401, Indiana University, Indianapolis, IN, 46220, USA

    Julie L. Otte

  8. N319 CPHB, Holden Comprehensive Cancer Center, University of Iowa, Iowa City, IA, 52242, USA

    Sarah L. Mott

  9. S441A CPHB, Department of Epidemiology, University of Iowa, Iowa City, IA, 52242, USA

    Elizabeth A. Chrischilles

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  1. Bradley D. McDowell
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Corresponding author

Correspondence to Bradley D. McDowell.

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Conflict of interest

Dr. Klemp founded and owns stock in Cancer Survivorship Training, Inc., and received honoraria from Novartis Oncology, Pfizer Oncology, and Myriad Genetic Laboratories. Ms. Mott received grant support from the Rising Tide Foundation for Clinical Cancer Research. Dr. Otte received travel support from the National Institutes of Health. The remaining authors declare that they have no potential conflict of interest.

Research involving human participants

All procedures performed in studies involving human participants 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.

Informed consent

By returning the “Share Thoughts on Breast Cancer” survey to the study coordinating center, participants provided their informed consent to participate (as described in the survey instructions).

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The views, statements, and opinions presented in this work are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its board of governors or methodology committee or other participants in PCORnet.

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McDowell, B.D., Klemp, J., Blaes, A. et al. The association between cancer care coordination and quality of life is stronger for breast cancer patients with lower health literacy: A Greater Plains Collaborative study. Support Care Cancer 28, 887–895 (2020). https://doi.org/10.1007/s00520-019-04894-y

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