Supportive Care in Cancer

, Volume 22, Issue 6, pp 1563–1570 | Cite as

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

  • Virginia Sun
  • Marcia Grant
  • Carmit K. McMullen
  • Andrea Altschuler
  • M. Jane Mohler
  • Mark C. Hornbrook
  • Lisa J. Herrinton
  • Robert S. Krouse
Original Article



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.


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.


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.


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.


Colorectal cancer Survivorship Ostomy Quality of life 



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.


  1. 1.
    Siegel R, Naishadham D, Jemal A (2013) Cancer statistics, 2013. CA Cancer J Clin 63:11–30PubMedCrossRefGoogle Scholar
  2. 2.
    Edwards BK, Ward E, Kohler BA, Eheman C, Zauber AG, Anderson RN et al (2010) Annual report to the nation on the status of cancer, 1975–2006, featuring colorectal cancer trends and impact of interventions (risk factors, screening, and treatment) to reduce future rates. Cancer 116:544–573PubMedCentralPubMedCrossRefGoogle Scholar
  3. 3.
    N Howlander, A Noone, M Krapcho, N Neyman, R Aminou, W Waldron et al (2011) SEER cancer statistics review, 1975–2008, based on November 2010 SEER data submission.
  4. 4.
    Faul LA, Shibata D, Townsend I, Jacobsen PB (2010) Improving survivorship care for patients with colorectal cancer. Cancer Control 17:35–43PubMedGoogle Scholar
  5. 5.
    Ness S, Kokal J, Fee-Schroeder K, Novotny P, Satele D, Barton D (2013) Concerns across the survivorship trajectory: results from a survey of cancer survivors. Oncol Nurs Forum 40:35–42PubMedCrossRefGoogle Scholar
  6. 6.
    Jansen L, Herrmann A, Stegmaier C, Singer S, Brenner H, Arndt V (2011) Health-related quality of life during the 10 years after diagnosis of colorectal cancer: a population-based study. J Clin Oncol 29:3263–3269PubMedCrossRefGoogle Scholar
  7. 7.
    Jansen L, Koch L, Brenner H, Arndt V (2010) Quality of life among long-term (≥5 years) colorectal cancer survivors—systematic review. Eur J Cancer 46:2879–2888PubMedCrossRefGoogle Scholar
  8. 8.
    Baldwin CM, Grant M, Wendel C, Rawl S, Schmidt CM, Ko C et al (2008) Influence of intestinal stoma on spiritual quality of life of U.S. veterans. J Holist Nurs 26:185–194PubMedCrossRefGoogle Scholar
  9. 9.
    Coons SJ, Chongpison Y, Wendel CS, Grant M, Krouse RS (2007) Overall quality of life and difficulty paying for ostomy supplies in the Veterans Affairs ostomy health-related quality of life study: an exploratory analysis. Med Care 45:891–895PubMedCrossRefGoogle Scholar
  10. 10.
    Krouse R, Grant M, Ferrell B, Dean G, Nelson R, Chu D (2007) Quality of life outcomes in 599 cancer and non-cancer patients with colostomies. J Surg Res 138:79–87PubMedCrossRefGoogle Scholar
  11. 11.
    Krouse RS, Herrinton LJ, Grant M, Wendel CS, Green SB, Mohler MJ et al (2009) Health-related quality of life among long-term rectal cancer survivors with an ostomy: manifestations by sex. J Clin Oncol 27:4664–4670PubMedCentralPubMedCrossRefGoogle Scholar
  12. 12.
    Liu L, Herrinton LJ, Hornbrook MC, Wendel CS, Grant M, Krouse RS (2010) Early and late complications among long-term colorectal cancer survivors with ostomy or anastomosis. Dis Colon Rectum 53:200–212PubMedCentralPubMedCrossRefGoogle Scholar
  13. 13.
    Mitchell KA, Rawl SM, Schmidt CM, Grant M, Ko CY, Baldwin CM et al (2007) Demographic, clinical, and quality of life variables related to embarrassment in veterans living with an intestinal stoma. J Wound Ostomy Continence Nurs 34:524–532PubMedCrossRefGoogle Scholar
  14. 14.
    Mohler MJ, Coons SJ, Hornbrook MC, Herrinton LJ, Wendel CS, Grant M et al (2008) The health-related quality of life in long-term colorectal cancer survivors study: objectives, methods and patient sample. Curr Med Res Opin 24:2059–2070PubMedCentralPubMedCrossRefGoogle Scholar
  15. 15.
    Popek S, Grant M, Gemmill R, Wendel CS, Mohler MJ, Rawl SM et al (2010) Overcoming challenges: life with an ostomy. Am J Surg 200:640–645PubMedCrossRefGoogle Scholar
  16. 16.
    Sun V, Grant M, McMullen CK, Altschuler A, Mohler MJ, Hornbrook MC et al (2013) Surviving colorectal cancer: long-term, persistent ostomy-specific concerns and adaptations. J Wound Ostomy Continence Nurs 40:61–72PubMedCentralPubMedCrossRefGoogle Scholar
  17. 17.
    Beaver K, Latif S, Williamson S, Procter D, Sheridan J, Heath J et al (2011) An exploratory study of the follow-up care needs of patients treated for colorectal cancer. J Clin Nurs 19:3291–3300CrossRefGoogle Scholar
  18. 18.
    Faul LA, Rivers B, Shibata D, Townsend I, Cabrera P, Quinn GP et al (2012) Survivorship care planning in colorectal cancer: feedback from survivors & providers. J Psychosoc Oncol 30:198–216PubMedCentralPubMedCrossRefGoogle Scholar
  19. 19.
    Krouse RS, Mohler MJ, Wendel CS, Grant M, Baldwin CM, Rawl SM et al (2006) The VA Ostomy Health-Related Quality of Life Study: objectives, methods, and patient sample. Curr Med Res Opin 22:781–791PubMedCrossRefGoogle Scholar
  20. 20.
    Grant M, McMullen C, Altschuler A, Mohler M, Hornbrook M, Herrinton L et al (2011) Gender differences in quality of life among long-term colorectal cancer survivors with ostomies. Oncol Nurs Forum 38:587–596PubMedCentralPubMedCrossRefGoogle Scholar
  21. 21.
    Bowman KF, Rose JH, Deimling GT (2006) Appraisal of the cancer experience by family members and survivors in long-term survivorship. Psychooncology 15:834–845PubMedCrossRefGoogle Scholar
  22. 22.
    Deimling GT, Kahana B, Bowman KF, Schaefer ML (2002) Cancer survivorship and psychological distress in later life. Psychooncology 11:479–494PubMedCrossRefGoogle Scholar
  23. 23.
    Tobin GA, Begley C (2008) Receiving bad news: a phenomenological exploration of the lived experience of receiving a cancer diagnosis. Cancer Nurs 31:E31–E39PubMedCrossRefGoogle Scholar
  24. 24.
    Salander P (2002) Bad news from the patient’s perspective: an analysis of the written narratives of newly diagnosed cancer patients. Soc Sci Med 55:721–732PubMedCrossRefGoogle Scholar
  25. 25.
    Denlinger CS, Barsevick AM (2009) The challenges of colorectal cancer survivorship. J National Compr Cancer Netw (JNCCN) 7:883–894Google Scholar
  26. 26.
    Hewitt ME, Greenfield S, Stovall E (2006) From cancer patient to cancer survivors: lost in transition. National Academies Press, Washington, DCGoogle Scholar
  27. 27.
    American College of Surgeons (2012) Commission on cancer: cancer program standards 2012, Version 1.2: ensuring patient-centered care. Accessed 14 Jan 2014
  28. 28.
    Levit L, Balogh E, Nass S, Ganz PA (2013) Delivering high-quality cancer care: charting a new course for a system in crisis. National Academies Press. Washington, DCGoogle Scholar
  29. 29.
    Griffith KA, McGuire DB, Russo M (2010) Meeting survivors’ unmet needs: an integrated framework for survivor and palliative care. Semin Oncol Nurs 26:231–242PubMedCrossRefGoogle Scholar
  30. 30.
    Grant M, McCorkle R, Hornbrook MC, Wendel CS, Krouse R (2013) Development of a chronic care ostomy self-management program. J Cancer Educ 28:70–78PubMedCentralPubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Virginia Sun
    • 1
  • Marcia Grant
    • 1
  • Carmit K. McMullen
    • 2
  • Andrea Altschuler
    • 3
  • M. Jane Mohler
    • 4
    • 5
    • 6
  • Mark C. Hornbrook
    • 2
  • Lisa J. Herrinton
    • 7
  • Robert S. Krouse
    • 4
    • 8
  1. 1.Division of Nursing Research & Education, Department of Population SciencesBeckman Research Institute of the City of HopeDuarteUSA
  2. 2.Center for Health ResearchKaiser Permanente NorthwestPortlandUSA
  3. 3.Kaiser Permanente Medical Care ProgramOaklandUSA
  4. 4.College of MedicineUniversity of ArizonaTucsonUSA
  5. 5.College of Public HealthUniversity of ArizonaTucsonUSA
  6. 6.College of PharmacyUniversity of ArizonaTucsonUSA
  7. 7.Division of ResearchKaiser Permanente Medical Care ProgramOaklandUSA
  8. 8.Southern Arizona Veterans Affairs Health Care SystemTucsonUSA

Personalised recommendations