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From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies

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Abstract

Purpose

The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies.

Methods

Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes.

Results

Health-care-related themes described CRC survivors’ experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms.

Conclusions

Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL.

Structured abstract

The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.

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Acknowledgments

The research described was supported by grants R01 CA106912, P30 CA 33572, and P30 CA 23074 from the National Cancer Institute. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Cancer Institute or NIH.

Conflict of interest

Dr. Herrinton’s COIs include research contracts with P&G, Centocor, and Genentech. All other authors have no COIs to report.

Author information

Authors and Affiliations

  1. Division of Nursing Research & Education, Department of Population Sciences, Beckman Research Institute of the City of Hope, Duarte, CA, USA

    Virginia Sun & Marcia Grant

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

    Carmit K. McMullen & Mark C. Hornbrook

  3. Kaiser Permanente Medical Care Program, Oakland, CA, USA

    Andrea Altschuler

  4. College of Medicine, University of Arizona, Tucson, AZ, USA

    M. Jane Mohler & Robert S. Krouse

  5. College of Public Health, University of Arizona, Tucson, AZ, USA

    M. Jane Mohler

  6. College of Pharmacy, University of Arizona, Tucson, AZ, USA

    M. Jane Mohler

  7. Division of Research, Kaiser Permanente Medical Care Program, Oakland, CA, USA

    Lisa J. Herrinton

  8. Southern Arizona Veterans Affairs Health Care System, Tucson, AZ, USA

    Robert S. Krouse

Authors
  1. Virginia Sun
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  2. Marcia Grant
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  3. Carmit K. McMullen
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  4. Andrea Altschuler
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  5. M. Jane Mohler
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  6. Mark C. Hornbrook
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  7. Lisa J. Herrinton
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  8. Robert S. Krouse
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Corresponding author

Correspondence to Virginia Sun.

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Sun, V., Grant, M., McMullen, C.K. et al. From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies. Support Care Cancer 22, 1563–1570 (2014). https://doi.org/10.1007/s00520-014-2118-2

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  • DOI: https://doi.org/10.1007/s00520-014-2118-2

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