PURPOSE: The purpose of this article was to describe persistent ostomy-specific concerns and adaptations in long-term (>5 years) colorectal cancer survivors with ostomies.
SUBJECTS AND SETTINGS: Thirty-three colorectal cancer survivors who participated in 8 gender- and health-related quality of life stratified focus groups and 130 colorectal cancer survivors who provided written comments to 2 open-ended questions on ostomy location and pouch problems participated in the study. Data were collected on health maintenance organization members in Oregon, southwestern Washington, and northern California.
METHODS: Qualitative data were analyzed for the 8 focus groups and written comments from 2 open-ended survey questions. Discussions from the focu s groups were recorded, transcribed, and analyzed using content analysis. Written content from the open-ended questions was derived from a mailed questionnaire on health-related quality of life in survivors with ostomies and analyzed using content analysis.
RESULTS: Discussions related to persistent ostomy-related issues more than 5 years after formation were common. Persistent ostomy-related issues were focused on clothing restrictions and adaptations, dietary concerns, issues related to ostomy equipment and self-care, and the constant need to find solutions to adjust and readjust to living with an ostomy.
CONCLUSIONS: Ostomy-specific concerns persist 5 years and more for long-term colorectal cancer survivors after initial ostomy formation. Adaptations tend to be individualized and based on trial and error. Findings underscore the need to develop long-term support mechanisms that survivors can access to promote better coping and adjustment to living with an ostomy.
Virginia Sun, PhD, RN, Assistant Professor, Division of Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, California.
Marcia Grant, DNSc, RN, FAAN, Professor and Director, Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, California.
Carmit K. McMullen, PhD, Investigator, Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
Andrea Altschuler, PhD, Senior Consultant, Kaiser Permanente Medical Care Program, Oakland, California.
M. Jane Mohler, NP-C, MSN, MPH, PhD, Associate Professor, University of Arizona College of Medicine, College of Public Health, and College of Pharmacy, Tucson.
Mark C. Hornbrook, PhD, Chief Scientist, Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon.
Lisa J. Herrinton, PhD, Research Scientist, Kaiser Permanente Medical Care Program, Oakland, California.
Carol M. Baldwin, PhD, RN, CHTP, AHN-BC, FAAN, Associate Professor and Director, Center for World Health Promotion & Disease Prevention, Arizona State University College of Nursing & Health Innovation, Phoenix.
Robert S. Krouse, MD, FACS, Staff General and Oncologic Surgeon, Southern Arizona Veterans Affairs Health Care System, and Professor of Surgery, University of Arizona, College of Medicine, Tucson.
Correspondence: Virginia Sun, PhD, RN, City of Hope-Nursing Research and Education, Cancer Control and Population Sciences Program, 1500 East Duarte Rd, Duarte, CA 91010 (firstname.lastname@example.org).
Dr Herrinton's conflicts of interest include research contracts with P&G, Centocor, and Genentech. All other authors have no conflicts of interest to report.