Abstract
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). 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. 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). 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. NCT02974634.
Highlights
Cancer survivors (CS) whose treatment includes creation of a stoma, either colostomy, urostomy or ileostomy, face challenges that can impact all aspects of quality of life (QOL) [1,2,3,4]
We describe the greatest challenges reported from a randomized trial of cancer survivors with stomas
Fewer challenges submitted by the Ostomy Self-Management Telehealth (OSMT) group provides beginning evidence of the OSMT Program impact
Summary
Cancer survivors (CS) whose treatment includes creation of a stoma, either colostomy, urostomy or ileostomy, face challenges that can impact all aspects of quality of life (QOL) [1,2,3,4]. Challenges include taking care of the ostomy appliance and related skin care, dealing with personal feelings about the ostomy, managing to participate comfortably in social events, and managing personal and intimate relationships [6, 7] Results of these studies provided the foundation for development of a program on Ostomy SelfManagement [8]. One of the critiques of this initial program focused on the learning environment and the difficulties encountered in having to travel to the medical center for the classes To address this problem, we developed a telehealth version of the curriculum – the Ostomy Self-Management Telehealth (OSMT) program (10). We developed a telehealth version of the curriculum – the Ostomy Self-Management Telehealth (OSMT) program (10) This program provided the previously tested curriculum, teaching and support to postoperative ostomy survivors at home via secure group videoconferencing. This report describes survivors’ self-reported greatest challenges with ostomy care by study arm (OSMT or usual UC) and by type of ostomy
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