Supportive Care in Cancer

, Volume 26, Issue 11, pp 3933–3939 | Cite as

Ongoing ostomy self-care challenges of long-term rectal cancer survivors

  • Joanna E. BulkleyEmail author
  • Carmit K. McMullen
  • Marcia Grant
  • Christopher Wendel
  • Mark C. Hornbrook
  • Robert S. Krouse
Original Article



Surgical treatment for rectal cancer (RC) can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive, and financial resources. However, little is known about the extent of ongoing challenges related to ostomy self-care among long-term RC survivors. We analyzed the prevalence of self-reported ostomy self-care challenges and the physical and environmental factors that can support or undermine ostomy self-care.


We mailed surveys to long-term (≥ 5 years post-diagnosis) RC survivors, including 177 adults with ostomies who were members of integrated health systems in northern California, Oregon, and Washington State. Potential participants were identified through tumor registries. Data were also extracted from electronic health records.


The response rate was 65%. The majority of respondents were male (67%), and the mean age was 75 years. Sixty-three percent of respondents reported at least one ostomy self-care challenge. The most common challenges were leakage or skin problems around the ostomy and needing to change the pouching system too frequently. Twenty-two percent reported difficulty caring for their ostomy. Younger age and higher BMI were consistently related to ostomy self-care challenges.


The majority of RC survivors reported ostomy-related self-care challenges, and 31% experienced problems across multiple domains of ostomy self-care. In addition, most survivors reported significant physical challenges that could lead to ostomy-related disability. Although the participants surveyed had access to ostomy care nurses, the care gaps we found suggest that additional work is needed to understand barriers to ostomy care, reduce unmet needs, and improve well-being among this group.


Rectal cancer Oncology Ostomy self-care Survivorship Quality of Life 



The authors wish to acknowledge the invaluable contributions of Mary E. Wagner, University of Arizona, Tucson, AZ, for providing extensive administrative support, and Jill Pope, the Kaiser Permanente Center for Health Research, Portland, OR, for providing editorial support.


National Cancer Institute Grant No. R01-CA106912, HR-QOL in Colorectal Cancer Survivors with Stomas (Renewal), PI: Robert S. Krouse MD, an unrestricted donation from the Sun Capital Partners Foundation, and National Cancer Institute Arizona Cancer Center Support Grant CA023074.

Compliance with ethical standards

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. The Institutional Review Boards at the University of Arizona and in both Kaiser Permanente regions reviewed and approved the study protocol and survey instruments. The survey cover letter contained all elements of informed consent, and the requirement for signed consent forms was waived by all the IRBs. This article does not contain any studies with animals performed by any of the authors.


The contents of this work are solely the responsibility of the authors and do not necessarily represent the official views of the National Cancer Institute, the National Institutes of Health, or Kaiser Permanente.

Conflict of interest

We, and our immediate family members, including spouses or partners, have no financial relationships relevant to the content of this manuscript. The corresponding author has full control of the primary data and will allow the journal to review the deidentified data if requested.


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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Kaiser Permanente Center for Health ResearchPortlandUSA
  2. 2.Department of Nursing Research & EducationCity of Hope National Medical CenterDuarteUSA
  3. 3.University of Arizona College of MedicineTucsonUSA
  4. 4.Cpl. Michael J. Crescenz Veterans Affairs Medical CenterPhiladelphiaUSA
  5. 5.Perelman School of MedicineUniversity of PennsylvaniaPhiladelphiaUSA

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