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Cancer survivors’ greatest challenges of living with an ostomy: findings from the Ostomy Self-Management Telehealth (OSMT) randomized trial

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Abstract

Objectives

An ostomy results in lifelong quality of life changes for a cancer survivor. We describe the greatest challenges reported from a randomized trial of cancer survivors with stomas (ostomies).

Methods

Cancer survivors with ostomies participating in a multi-site randomized prospective trial of an Ostomy Self-Management Telehealth (OSMT) program versus usual care (UC) were surveyed at six months post accrual. An open-ended question requested greatest challenges after ostomy surgery. Quantitative descriptive and qualitative analyses were used to examine greatest challenges reported.

Results

A total of 118 trial participants identified greatest challenges with 55 in the OSMT and 63 in the UC. Six conceptual domains were used to code comments—physical, psychological, social, and spiritual quality of life; ostomy-specific issues, and healthcare issues. The OSMT contributed 187 comments, and UC contributed 235 comments. Ostomy specific issues and social well-being had the most comments overall with UC contributing more comments in all domains except physical well-being. Word Clouds revealed post-operative and treatment-related issues and going out in public as the most common challenges in both groups. Word Clouds compared types of ostomies revealing bowel function challenges (colostomy group), difficulties going out in public (ileostomy group), and positive support (urostomy group).

Conclusions

Fewer challenges submitted by the OSMT group provide the beginning evidence of the OSMT program impact. Dominant challenges across both groups were social well-being and ostomy care. Challenges varied by type of ostomy. Findings support long-term care and support for all cancer survivors with ostomies.

Trial registration

NCT02974634

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Data availability

Not applicable.

Code availability

Not applicable.

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Funding

Research reported in this publication was supported through a Patient-Centered Outcomes Research Institute® (PCORI®) Program Award (CDR 1507–31690). Funding for this research has been provided in part by The Benjamin & Mary Siddons Measey Foundation (Miss Mo).

Author information

Authors and Affiliations

  1. Division of Nursing Research and Education, Department of Population Sciences, City of Hope, Duarte, CA, USA

    Marcia Grant & Virginia Sun

  2. Unaffilated, Wound, Ostomy, and Continence Nurse, Tucson, AZ, USA

    Nancy J. Tallman

  3. University of Arizona, Tucson, AZ, USA

    Christopher S. Wendel & Christie Simons

  4. School of Nursing and School of Public Health, Yale University, New Haven, CT, USA

    Ruth McCorkle & Elizabeth Ercolano

  5. University of Pennsylvania, Philadelphia, PA, USA

    Julia Mo & Sabreen Raza

  6. Patient Stakeholder, Philadelphia, PA, USA

    Deborah Donahue, Frank Passero & Dan Fry

  7. Patient Stakeholder, Duarte, CA, USA

    Joshua Henson & Lyn MacDougall

  8. Patient Stakeholder, New Haven, CT, USA

    Jonathan Friedlaender & Pamela Pitcher

  9. Arizona Telemedicine Program, University of Arizona, Tucson, AZ, USA

    Pete Yonsetto, Michael J. Holcomb & Ronald S. Weinstein

  10. Kaiser Permanente Center for Health Research, Portland, OR, USA

    Mark C. Hornbrook

  11. Perelman School of Medicine, University of Pennsylvania and the Corporal Michael J Crescenz Veterans Affairs Medical Center, Philadelphia, PA, USA

    Robert S. Krouse

Authors
  1. Marcia Grant
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  2. Virginia Sun
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  3. Nancy J. Tallman
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  4. Christopher S. Wendel
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  5. Ruth McCorkle
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  6. Elizabeth Ercolano
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  7. Christie Simons
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  8. Julia Mo
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  9. Sabreen Raza
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  10. Deborah Donahue
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  11. Frank Passero
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  12. Joshua Henson
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  13. Lyn MacDougall
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  14. Jonathan Friedlaender
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  15. Pamela Pitcher
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  16. Dan Fry
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  17. Pete Yonsetto
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  18. Michael J. Holcomb
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  19. Mark C. Hornbrook
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  20. Ronald S. Weinstein
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  21. Robert S. Krouse
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Contributions

Conceptualization: Marcia Grant, Virginia Sun, Ruth McCorkle, Robert S. Krouse. Methodology: Marcia Grant, Virginia Sun, Ruth McCorkle, Robert S. Krouse, Elizabeth Ercolano. Formal analysis: Marcia Grant, Virginia Sun, Ruth McCorkle, Robert S. Krouse. Methodology: Marcia Grant, Virginia Sun, Robert S. Krouse, Elizabeth Ercolano, Nancy J Tallman, Christopher S. Wendel, Christie Simons, Julia Mo, Sabreen Raza, Deborah Donahue, Frank Passero, Joshua Hanson, Lyn MacDougall, Jonathan Friedlaender, Pamela Pitcher, Dan Fry, Pete Yonsetto, Mark C. Hornbrook. Funding acquisition: Marcia Grant, Virginia Sun, Ruth McCorkle, Robert S. Krouse Ronald S Weinstein. Investigation: Marcia Grant, Virginia Sun, Ruth McCorkle, Robert S. Krouse. Project administration: Sabreen Raza. Resources: Pete Yonsetto, Michael J Holcomb, Ronald S Weinstein. Software: Pete Yonsetto, Michael J Holcomb, Ronald S Weinstein. Supervision: Virginia Sun, Ruth McCorkle, Robert S. Krouse. Validation: Marcia Grant, Virginia Sun, Robert S. Krouse. Visualization: Marcia Grant, Virginia Sun, Ruth McCorkle, Robert S. Krouse. Writing, original draft: Marcia Grant. Writing, review and editing: Marcia Grant, Virginia Sun, Nancy J. Tallman, Christopher S. Wendel, Ruth McCorkle, Elizabeth Ercolano, Christie Simons, Julia Mo, Sabreen Raza, Deborah Donahue, Frank Passero, Joshua Henson, Lyn MacDougall, Jonathan Friedlaender, Pamela Pitcher, Dan Fry, Pete Yonsetto, Michael J. Holcomb, BS, Mark C. Hornbrook, Ronald S. Weinstein, Robert S. Krouse.

Corresponding author

Correspondence to Marcia Grant.

Ethics declarations

Ethics approval

Approval was obtained from the Institutional Review Board at the University of Pennsylvania, City of Hope, and Yale University.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Consent for publication

Patients signed informed consent regarding publishing their data.

Conflict of interest

The authors declare no competing interests.

Disclaimer

All statements presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.

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Ruth McCorkle passed away during the preparation of this study.

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Grant, M., Sun, V., Tallman, N.J. et al. Cancer survivors’ greatest challenges of living with an ostomy: findings from the Ostomy Self-Management Telehealth (OSMT) randomized trial. Support Care Cancer 30, 1139–1147 (2022). https://doi.org/10.1007/s00520-021-06449-6

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  • DOI: https://doi.org/10.1007/s00520-021-06449-6

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