title: The greatest challenges reported by long-term colorectal cancer survivors with stomas.
abstract: This paper presents a qualitative analysis of the greatest challenges reported by long-term colorectal cancer survivors with ostomies. Surveys that included an open-ended question about challenges of living with an ostomy were administered at three Kaiser Permanente regions: Northern California, Northwest, and Hawaii. The study was coordinated at the Southern Arizona Veterans Affairs Health Care System in Tucson. The City of Hope Quality of Life Model for Ostomy Patients provided a framework for the study's design, measures, data collection, and data analysis. The study's findings may be generalized broadly to community settings across the United States. Results replicate those of previous research among veterans, California members of the United Ostomy Association, Koreans with ostomies, and colorectal cancer survivors with ostomies residing in the United Kingdom. The greatest challenges reported by 178 colorectal cancer survivors with ostomies confirmed the Institute of Medicine's findings that survivorship is a distinct, chronic phase of cancer care and that cancer's effects are broad and pervasive. The challenges reported by study participants should inform the design, testing and integration of targeted education, early interventions, and ongoing support services for colorectal cancer patients with ostomies.
authors.affiliation: Center for Health Research, Northwest/Hawaii/Southeast, Kaiser Permanente Northwest, 3800 North Interstate Avenue, Portland, OR 97227-1110, USA. carmit.mcmullen@kpchr.org
authors.forename: Carmit K
authors.initials: CK
authors.lastname: McMullen
authors.forename: Mark C
authors.initials: MC
authors.lastname: Hornbrook
authors.forename: Marcia
authors.initials: M
authors.lastname: Grant
authors.forename: Carol M
authors.initials: CM
authors.lastname: Baldwin
authors.forename: Christopher S
authors.initials: CS
authors.lastname: Wendel
authors.forename: M Jane
authors.initials: MJ
authors.lastname: Mohler
authors.forename: Andrea
authors.initials: A
authors.lastname: Altschuler
authors.forename: Michelle
authors.initials: M
authors.lastname: Ramirez
authors.forename: Robert S
authors.initials: RS
authors.lastname: Krouse
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D002140:California; D015179:Colorectal Neoplasms / Q000523:psychology* / Q000601:surgery; D005260:Female; D006254:Hawaii; D006801:Humans; D008571:Men; D008875:Middle Aged; D015205:Northwestern United States; D010030:Ostomy / Q000523:psychology* / Q000534:rehabilitation; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D012944:Social Support; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*