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

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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

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References

  1. Siegel RL, Miller KD, Jemal A (2015) Cancer statistics, 2015. CA Cancer J Clin 65:5–29

    Article  Google Scholar 

  2. Mohammed S, Anaya DA, Awad SS, Albo D, Berger DH, Artinyan A (2015) Sphincter preservation rates after radical resection for rectal cancer in the United States veteran population: opportunity for improvement in early disease. Ann Surg Oncol 22:216–223

    Article  Google Scholar 

  3. World Health Organization (2002) Towards a common language for functioning, Disability and Health. Geneva

  4. Pollard B, Johnston M, Dieppe P (2011) Exploring the relationships between International Classification of Functioning, Disability and Health (ICF) constructs of impairment, activity limitation and participation restriction in people with osteoarthritis prior to joint replacement. BMC Musculoskelet Disord 12:97

    Article  Google Scholar 

  5. World Health Organization (2003) ICF CHECKLIST, Version 2.1a, Clinician Form, for International Classification of Functioning, Disability and Health. In: Editor (ed)^(eds) Book ICF CHECKLIST, version 2.1a, clinician form, for international classification of functioning, disability and health, City

  6. Sun V, Grant M, McMullen CK, Altschuler A, Mohler MJ, Hornbrook MC, Herrinton LJ, Baldwin CM, Krouse RS (2013) Surviving colorectal cancer: long-term, persistent ostomy-specific concerns and adaptations. J Wound Ostomy Continence Nurs 40:61–72

    Article  CAS  Google Scholar 

  7. McMullen C, Wasserman J, Altschuler A, Grant M, Hornbrook M, Liljestrand P, Briggs C, Krouse R (2011) Untreated peristomal skin complications among long-term colorectal cancer survivors with ostomies. Clin J Oncol Nurs 15:644–650

    Article  Google Scholar 

  8. Annells M (2006) The experience of flatus incontinence from a bowel ostomy: a hermeneutic phenomenology. J Wound Ostomy Continence Nurs 33:518–524

    Article  Google Scholar 

  9. Klopp AL (1990) Body image and self-concept among individuals with stomas. J Enterostomal Ther 17:98–105

    CAS  PubMed  Google Scholar 

  10. Manderson L (2005) Boundary breaches: the body, sex and sexuality after stoma surgery. Soc Sci Med 61:405–415

    Article  Google Scholar 

  11. Notter J, Burnard P (2006) Preparing for loop ileostomy surgery: women’s accounts from a qualitative study. Int J Nurs Stud 43:147–159

    Article  Google Scholar 

  12. Torquato Lopes AP, Decesaro M (2014) The adjustments experienced by persons with an ostomy: an integrative review of the literature. Ostomy Wound Manage 60:34–42

    PubMed  Google Scholar 

  13. Altschuler A, Ramirez M, Grant M, Wendel C, Hornbrook M, Herrinton L, Krouse R (2009) The influence of husbands’ or male partners’ support on women’s psychosocial adjustment to having an ostomy resulting from colorectal cancer. J Wound Ostomy Continence Nurs 36:299–305

    Article  Google Scholar 

  14. Danielsen AK, Soerensen EE, Burcharth K, Rosenberg J (2013) Learning to live with a permanent intestinal ostomy: impact on everyday life and educational needs. J Wound Ostomy Continence Nurs 40:407–412

    Article  Google Scholar 

  15. Grant M, McMullen CK, Altschuler A, Mohler MJ, Hornbrook MC, Herrinton LJ, Wendel CS, Baldwin CM, Krouse RS (2011) Gender differences in quality of life among long-term colorectal cancer survivors with ostomies. Oncol Nurs Forum 38:587–596

    Article  Google Scholar 

  16. Ito N, Ishiguro M, Uno M, Kato S, Shimizu S, Obata R, Tanaka M, Makoto K, Nagano M, Sugihara K, Kenichi K (2012) Prospective longitudinal evaluation of quality of life in patients with permanent colostomy after curative resection for rectal cancer: a preliminary study. J Wound Ostomy Continence Nurs 39:172–177

    Article  Google Scholar 

  17. McMullen C, Hornbrook M, Grant M, Baldwin C, Wendel C, Mohler M, Altschuler A, Ramirez M, Krouse R (2008) The greatest challenges reported by long-term colorectal cancer survivors with stomas. J Support Oncol 6:175–182

    PubMed  Google Scholar 

  18. Mols F, Lemmens V, Bosscha K, van den Broek W, Thong MS (2014) Living with the physical and mental consequences of an ostomy: a study among 1-10-year rectal cancer survivors from the population-based PROFILES registry. Psychooncology 23:998–1004

    Article  Google Scholar 

  19. Ramirez M, Altschuler A, McMullen C, Grant M, Hornbrook M, Krouse R (2014) “I didn't feel like I was a person anymore”: realigning full adult personhood after ostomy surgery. Med Anthropol Q 28:242–259

    Article  Google Scholar 

  20. Ramirez M, McMullen C, Grant M, Altschuler A, Hornbrook MC, Krouse RS (2009) Figuring out sex in a reconfigured body: experiences of female colorectal cancer survivors with ostomies. Women Health 49:608–624

    Article  Google Scholar 

  21. Shabbir J, Britton DC (2010) Stoma complications: a literature overview. Color Dis 12:958–964

    Article  CAS  Google Scholar 

  22. Skeps R, McMullen CK, Wendel CS, Bulkley J, Grant M, Mohler J, Hornbrook MC, Krouse RS, Herrinton LJ (2013) Changes in body mass index and stoma related problems in the elderly. Journal of geriatric oncology 4:84–89

    Article  Google Scholar 

  23. 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 45:891–895

    Article  Google Scholar 

  24. Sun V, Grant M, McMullen CK, Altschuler A, Mohler MJ, Hornbrook MC, Herrinton LJ, Krouse RS (2014) From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies. Support Care Cancer 22:1563–1570

    Article  Google Scholar 

  25. McMullen C, Schneider J, Altschuler A, Grant M, Hornbrook M, Liljestrand P, Krouse R (2014) Caregivers as healthcare managers: health management activities, needs, and caregiving relationships for colorectal cancer survivors with ostomies. Support Care Cancer 22:2401–2408

    Article  Google Scholar 

  26. Wendel CS, Grant M, Herrinton L, Temple LK, Hornbrook MC, McMullen CK, Bulkley JE, Altschuler A, Krouse RS (2014) Reliability and validity of a survey to measure bowel function and quality of life in long-term rectal cancer survivors. Qual Life Res 23:2831–2840

    Article  Google Scholar 

  27. Grant M, Ferrell B, Dean G, Uman G, Chu D, Krouse R (2004) Revision and psychometric testing of the City of Hope Quality of Life-Ostomy Questionnaire. Qual Life Res 13:1445–1457

    Article  Google Scholar 

  28. Ware J, Sherbourne C (1992) The MOS 36-item short-form health survey (SF-36). I Conceptual framework and item selection Med Care 30:473–483

    PubMed  Google Scholar 

  29. Given B, Given CW, Sikorskii A, Jeon S, McCorkle R, Champion V, Decker D (2008) Establishing mild, moderate, and severe scores for cancer-related symptoms: how consistent and clinically meaningful are interference-based severity cut-points? J Pain Symptom Manag 35:126–135

    Article  Google Scholar 

  30. Ware J, Kosinski M, Turner-Bowker D, Gandek B (2002) User’s manual for the SF-12v2® health survey with a supplement documenting SF-12® health survey. Lincoln, Rhode Island QualityMetric Incorporated,

  31. Deyo RA, Cherkin DC, Ciol MA (1992) Adapting a clinical comorbidity index for use with ICD-9-CM administrative databases. J Clin Epidemiol 45:613–619

    Article  CAS  Google Scholar 

  32. Burg MA, Adorno G, Lopez ED, Loerzel V, Stein K, Wallace C, Sharma DK (2015) Current unmet needs of cancer survivors: analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II. Cancer 121:623–630

    Article  Google Scholar 

  33. Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ (2009) What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 17:1117–1128

    Article  Google Scholar 

  34. Kotronoulas G, Papadopoulou C, Burns-Cunningham K, Simpson M, Maguire R (2017) A systematic review of the supportive care needs of people living with and beyond cancer of the colon and/or rectum. Eur J Oncol Nurs 29:60–70

    Article  Google Scholar 

  35. Funk R, Cisneros C, Williams RC, Kendall J, Hamann HA (2016) What happens after distress screening? Patterns of supportive care service utilization among oncology patients identified through a systematic screening protocol. Support Care Cancer 24:2861–2868

    PubMed  Google Scholar 

  36. Beitz JM (2014) Providing quality skin and wound care for the bariatric patient: an overview of clinical challenges. Ostomy Wound Manage 60:12–21

    PubMed  Google Scholar 

  37. Hornbrook MC, Grant M, Wendel C, Bulkley JE, McMullen CK, Altschuler A, Temple LK, Herrinton LJ, Krouse RS (2018) Rectal cancer survivors’ participation in productive activities. Perm J 22:17–24

    Google Scholar 

  38. Cross HH, Roe CA, Wang D (2014) Staff nurse confidence in their skills and knowledge and barriers to caring for patients with ostomies. J Wound Ostomy Continence Nurs 41:560–565

    Article  Google Scholar 

  39. Tallman NJ, Cobb MD, Grant M, Wendel CS, Colwell J, Ercolano E, Krouse R (2015) Colostomy irrigation: issues most important to wound, ostomy and continence nurses. J Wound Ostomy Continence Nurs 42:487–493

    Article  Google Scholar 

  40. Cobb MD, Grant M, Tallman NJ, Wendel CS, Colwell J, McCorkle R, Krouse RS (2015) Colostomy irrigation: current knowledge and practice of WOC nurses. J Wound Ostomy Continence Nurs 42:65–70

    Article  Google Scholar 

  41. McMullen CK, Bulkley JE, Altschuler A, Wendel CS, Grant M, Hornbrook MC, Sun V, Krouse RS (2016) Greatest challenges of rectal cancer survivors: results of a population-based survey. Dis Colon rectum 59:1019–1027

    Article  Google Scholar 

  42. Carey M, Lambert S, Smits R, Paul C, Sanson-Fisher R, Clinton-McHarg T (2012) The unfulfilled promise: a systematic review of interventions to reduce the unmet supportive care needs of cancer patients. Support Care Cancer 20:207–219

    Article  Google Scholar 

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Acknowledgements

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.

Funding

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.

Author information

Authors and Affiliations

  1. Kaiser Permanente Center for Health Research, 3800 North Interstate Avenue, Portland, OR, 97227-1110, USA

    Joanna E. Bulkley, Carmit K. McMullen & Mark C. Hornbrook

  2. Department of Nursing Research & Education, City of Hope National Medical Center, Duarte, CA, USA

    Marcia Grant

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

    Christopher Wendel

  4. Cpl. Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia, PA, USA

    Robert S. Krouse

  5. Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

    Robert S. Krouse

Authors
  1. Joanna E. Bulkley
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  2. Carmit K. McMullen
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  3. Marcia Grant
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  4. Christopher Wendel
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  5. Mark C. Hornbrook
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  6. Robert S. Krouse
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Corresponding author

Correspondence to Joanna E. Bulkley.

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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.

Disclaimer

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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Bulkley, J.E., McMullen, C.K., Grant, M. et al. Ongoing ostomy self-care challenges of long-term rectal cancer survivors. Support Care Cancer 26, 3933–3939 (2018). https://doi.org/10.1007/s00520-018-4268-0

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