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Supportive Care in Cancer
Published in: Supportive Care in Cancer 6/2014

01-06-2014 | Original Article

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

Authors: Virginia Sun, Marcia Grant, Carmit K. McMullen, Andrea Altschuler, M. Jane Mohler, Mark C. Hornbrook, Lisa J. Herrinton, Robert S. Krouse

Published in: Supportive Care in Cancer | Issue 6/2014

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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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Metadata
Title
From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies
Authors
Virginia Sun
Marcia Grant
Carmit K. McMullen
Andrea Altschuler
M. Jane Mohler
Mark C. Hornbrook
Lisa J. Herrinton
Robert S. Krouse
Publication date
01-06-2014
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 6/2014
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-014-2118-2

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