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Optimizing patient-reported outcome and risk factor reporting from cancer survivors: a randomized trial of four different survey methods among colorectal cancer survivors

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Abstract

Purpose

The goal of this study was to determine response rates and associated costs of different survey methods among colorectal cancer (CRC) survivors.

Methods

We assembled a cohort of 16,212 individuals diagnosed with CRC (2010–2014) from six health plans, and randomly selected 4000 survivors to test survey response rates across four mixed-mode survey administration protocols (in English and Spanish): arm 1, mailed survey with phone follow-up; arm 2, interactive voice response (IVR) followed by mail; arm 3; email linked to web-based survey with mail follow-up; and arm 4, email linked to web-based survey followed by IVR.

Results

Our overall response rate was 50.2%. Arm 1 had the highest response rate (59.9%), followed by arm 3 (51.9%), arm 2 (51.2%), and arm 4 (37.9%). Response rates were higher among non-Hispanic whites in all arms than other racial/ethnic groups (p < 0.001), among English (51.5%) than Spanish speakers (36.4%) (p < 0.001), and among higher (53.7%) than lower (41.4%) socioeconomic status (p < 0.001). Survey arms were roughly comparable in cost, with a difference of only 8% of total costs between the most (arm 2) and least (arm 3) expensive arms.

Conclusions

Mailed surveys followed by phone calls achieved the highest response rate; email invitations and online surveys cost less per response. Electronic methods, even among those with email availability, may miss important populations including Hispanics, non-English speakers, and those of lower socioeconomic status.

Implications for cancer survivors

Our results demonstrate effective methods for capturing patient-reported outcomes, inform the relative benefits/disadvantages of the different methods, and identify future research directions.

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Acknowledgements

The authors gratefully acknowledge the assistance of the following people in conduct of this research: Michelle Henton, MA (Kaiser Permanente, Colorado); Jane Anau and Doug Kane (Group Health Research Institute); the members of the PORTAL Patient Engagement Core (PEC): Rose Hesselbrock, Florence Kurtilla, and Charles Anderson; and our colleagues at Fight Colorectal Cancer, including Anjelica Davis, MPPA. We thank the developers of the web-based and IVR systems at Kaiser Permanente, Colorado: Jonah N. Langer, David A. Steffen, MPH, Michael R. Shainline, MS, MBA, and Andew Hamblin. We also sincerely thank the study participants for their contributions to this project.

Author information

Authors and Affiliations

  1. Institute for Health Research, Kaiser Permanente Colorado, 10065 E. Harvard Avenue, Suite 300, Denver, CO, 80231, USA

    Heather Spencer Feigelson, Sarah Madrid, Andrew T Sterrett, J David Powers & Erica Blum-Barnett

  2. Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA

    Carmit K McMullen

  3. HealthPartners Institute, Bloomington, MN, USA

    Pamala A Pawloski & Jeanette Y Ziegenfuss

  4. Department of Research & Evaluation, Kaiser Permanente Southern California, Pasadena, CA, USA

    Virginia P. Quinn

  5. Group Health Research Institute, Seattle, WA, USA

    David E Arterburn

  6. Division of Research, Kaiser Permanente Northern California, Oakland, CA, USA

    Douglas A Corley

Authors
  1. Heather Spencer Feigelson
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  2. Carmit K McMullen
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  3. Sarah Madrid
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  4. Andrew T Sterrett
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  5. J David Powers
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  6. Erica Blum-Barnett
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  7. Pamala A Pawloski
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  8. Jeanette Y Ziegenfuss
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  9. Virginia P. Quinn
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  10. David E Arterburn
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  11. Douglas A Corley
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Corresponding author

Correspondence to Heather Spencer Feigelson.

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Funding

This work was support by Contract No.CDRN-1306-04681 from the Patient Outcomes Research Institute (Awarded to Drs. Elizabeth M. McGlynn and Tracy Lieu). The infrastructure builds upon data structures that receive ongoing support from the National Cancer Institute Cancer (NCI) Research Network (Grant No. U24 CA171524, awarded to Dr. Lawrence H Kushi, PI) and the Kaiser Permanente Center for Effectiveness and Safety Research.

Conflict of interest

All authors declare that they have no conflicts of interest.

Ethical approval

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. This study was approved by the Institutional Review Board of KPCO; all other participating health plans ceded oversight to KPCO.

Informed consent

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

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Feigelson, H.S., McMullen, C.K., Madrid, S. et al. Optimizing patient-reported outcome and risk factor reporting from cancer survivors: a randomized trial of four different survey methods among colorectal cancer survivors. J Cancer Surviv 11, 393–400 (2017). https://doi.org/10.1007/s11764-017-0596-1

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  • DOI: https://doi.org/10.1007/s11764-017-0596-1

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