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Health care improvement and survivorship priorities of colorectal cancer survivors: findings from the PORTAL colorectal cancer cohort survey

Supportive Care in Cancer volume 27, pages 147–156 (2019)Cite this article

Abstract

Purpose

Few population-level surveys have explored patient-centered priorities for improving colorectal cancer survivors’ care. Working with patients, we designed a survey to identify care improvement and survivorship priorities.

Methods

We surveyed a random sample of 4000 patients from a retrospective, population-based cohort of colorectal cancer survivors diagnosed during 2010–2014. The survey included two multiple response questions: “What would you have changed about your cancer diagnosis and treatment experience?” and “What are your biggest health or lifestyle concerns (other than having cancer) since being diagnosed?” Multivariable regression identified characteristics associated with endorsement of health care experience and survivorship concerns.

Results

Survey response rate was 50.2% (2000/3986). Fifty-three percent reported at least one unmet need, most commonly for more information about life after treatment (26.7%). Survivors of rectal cancer reported more needs than respondents with colon cancer; persons of color reported more needs than non-Hispanic whites; individuals without high school diplomas reported more needs than individuals with more education. Fear of recurrence was the most common health/lifestyle concern (58.9%). Respondents under age 65 reported nearly all health/lifestyle concerns more often than respondents over age 74. Rectal cancer survivors reported more concerns about activity limitation, changes, and body function and appearance than colon cancer survivors. Persons of color were more likely to report financial concerns than non-Hispanic whites.

Conclusions

The greatest needs for intervention are among survivors of rectal cancer, survivors of minority racial/ethnic background, and survivors of younger age. Survivors with low educational attainment and those with higher stage disease could also benefit.

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Acknowledgements

This study used the infrastructure developed by the PORTAL (Patient Outcomes Research to Advance Learning) Network, a consortium of three integrated delivery systems (Kaiser Permanente, HealthPartners, and Denver Health) and their affiliated research centers. The statements in this article are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI) and its Board of Governors or Methodology Committee.

Funding

This work was supported by Contract No. CDRN-1306-04681 from the Patient Outcomes Research Institute (awarded to Drs. Elizabeth M. McGlynn and Tracy Lieu). The work 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.

Author information

Affiliations

  1. Center for Health Research, Kaiser Permanente Northwest, 3800 N. Interstate Ave, Portland, OR, 97227, USA

    Carmit McMullen & Joanna Bulkley

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

    Douglas A. Corley & Carol P. Somkin

  3. Institute for Health Research, Kaiser Permanente Colorado, Denver, CO, USA

    Sarah Madrid & Heather Spencer Feigelson

  4. Fight Colorectal Cancer (Fight CRC), Springfield, MO, USA

    Anjelica Q. Davis & Florence Kurtilla

  5. PORTAL Patient Engagement Council, Portland, OR, USA

    Rose Hesselbrock, Florence Kurtilla & Charles K. Anderson

  6. Kasier Permanente Washington Research Institute, Seattle, WA, USA

    Rose Hesselbrock & David Arterburn

  7. HealthPartners Institute, Minneapolis, MN, USA

    Pamala A. Pawloski

  8. Department of Research and Evaluation, Kaiser Permanente Southern California, Los Angeles, CA, USA

    Nirupa R. Ghai

Authors
  1. Carmit McMullen
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  2. Joanna Bulkley
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  3. Douglas A. Corley
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  4. Sarah Madrid
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  5. Anjelica Q. Davis
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  6. Rose Hesselbrock
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  7. Florence Kurtilla
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  8. Charles K. Anderson
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  9. David Arterburn
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  10. Carol P. Somkin
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  11. Pamala A. Pawloski
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  12. Nirupa R. Ghai
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  13. Heather Spencer Feigelson
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Contributions

Carmit McMullen, PhD: design, analysis, interpretation, writing, and final approval.

Joanna Bulkley, PhD: analysis, interpretation, writing, and final approval.

Douglas A. Corley, MD, PhD: design, analysis, interpretation, writing, and final approval.

Sarah Madrid, MA: design, acquisition, writing, and final approval.

Anjelica Q. Davis, MPPA: design, interpretation, writing, and final approval.

Rose Hesselbrock, BA: design, interpretation, writing, and final approval.

Florence Kurtilla, MS: design, interpretation, writing, and final approval.

Charles K. Anderson, MDiv: design, interpretation, writing, and final approval.

David Arterburn, MD, MPH: design, interpretation, writing, and final approval.

Carol P. Somkin, PhD: design, interpretation, writing, and final approval.

Pamala A. Pawloski, PharmD: design, interpretation, writing, and final approval.

Nirupa R. Ghai, PhD: interpretation, writing, and final approval.

Heather Spencer Feigelson, PhD, MPH: design, acquisition, analysis, interpretation, writing, and final approval.

Corresponding author

Correspondence to Carmit McMullen.

Ethics declarations

This study was approved by the Institutional Review Board (IRB) of Kaiser Permanente Colorado (KPCO). After review and approval, all other participating health plans ceded oversight to the KPCO IRB.

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McMullen, C., Bulkley, J., Corley, D.A. et al. Health care improvement and survivorship priorities of colorectal cancer survivors: findings from the PORTAL colorectal cancer cohort survey. Support Care Cancer 27, 147–156 (2019). https://doi.org/10.1007/s00520-018-4299-6

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  • DOI: https://doi.org/10.1007/s00520-018-4299-6

Keywords

  • Colorectal cancer
  • Cancer survivors
  • Health disparities
  • Care improvement
  • Survey