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. 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.
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. 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.
Authors: Robert S Krouse; M Jane Mohler; Christopher S Wendel; Marcia Grant; Carol M Baldwin; Susan M Rawl; Ruth McCorkle; Kenneth E Rosenfeld; Clifford Y Ko; C Max Schmidt; Stephen Joel Coons Journal: Curr Med Res Opin Date: 2006-04 Impact factor: 2.580
Authors: Leigh Anne Faul; Brian Rivers; David Shibata; Ione Townsend; Patricia Cabrera; Gwendolyn P Quinn; Paul B Jacobsen Journal: J Psychosoc Oncol Date: 2012
Authors: Virginia Sun; Marcia Grant; Carmit K McMullen; Andrea Altschuler; M Jane Mohler; Mark C Hornbrook; Lisa J Herrinton; Carol M Baldwin; Robert S Krouse Journal: J Wound Ostomy Continence Nurs Date: 2013 Jan-Feb Impact factor: 1.741
Authors: Myong Hoon Ihn; Sung-Min Lee; Il Tae Son; Jin Taek Park; Heung-Kwon Oh; Duck-Woo Kim; Sung-Bum Kang Journal: Support Care Cancer Date: 2015-04-01 Impact factor: 3.603
Authors: Joanna E Bulkley; Carmit K McMullen; Marcia Grant; Christopher Wendel; Mark C Hornbrook; Robert S Krouse Journal: Support Care Cancer Date: 2018-05-29 Impact factor: 3.603
Authors: Mark C Hornbrook; Marcia Grant; Christopher Wendel; Joanna E Bulkley; Carmit K Mcmullen; Andrea Altschuler; Larissa Kf Temple; Lisa J Herrinton; Robert S Krouse Journal: Perm J Date: 2018
Authors: Carmit McMullen; Matthew Nielsen; Alison Firemark; Patricia Merino Price; Denise Nakatani; Jean Tuthill; Ruth McMyn; Anobel Odisho; Michael Meyers; David Shibata; Scott Gilbert Journal: Support Care Cancer Date: 2018-06-06 Impact factor: 3.603
Authors: Marianne Krogsgaard; Helle Ø Kristensen; Edgar J B Furnée; Sanne J Verkuijl; Nuno José Rama; Hugo Domingos; João Maciel; Alejandro Solis-Peña; Eloy Espín-Basany; Marta Hidalgo-Pujol; Sebastiano Biondo; Annika Sjövall; Katrine J Emmertsen; Anne Thyø; Peter Christensen Journal: Support Care Cancer Date: 2022-08-05 Impact factor: 3.359
Authors: Lisa J Herrinton; Andrea Altschuler; Carmit K McMullen; Joanna E Bulkley; Mark C Hornbrook; Virginia Sun; Christopher S Wendel; Marcia Grant; Carol M Baldwin; Wendy Demark-Wahnefried; Larissa K F Temple; Robert S Krouse Journal: CA Cancer J Clin Date: 2016-03-21 Impact factor: 508.702