This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Some people with cancer need surgery to remove their bladder or rectum. After their surgery, patients may have an ostomy, or a hole created in their abdomen to help clear waste from the body. An ostomy bag attached to the body collects the waste.
More than 1 million people in the United States live with an ostomy. For many bladder and rectal cancer survivors, ostomies are life-saving. However, ostomies can limit activities and lessen quality of life. Some people report that it takes a year to feel comfortable with their ostomy. Others report never getting used to it.
Some programs try to help patients adapt to living with an ostomy. However, not all patients can take part in an in-person program. Patients may be elderly, ill, or have other barriers to getting to the program site. In addition, there is a shortage of nurses trained in ostomy care to help run these programs. To make it easier for patients to access such programs, telehealth provides health care via the internet.
In this study, the research team is testing a telehealth program that offers patients online training in ostomy self-care from an ostomy nurse. The program also includes support from trained peers who have experience taking care of their own ostomy. The team is comparing the telehealth program with the care people with ostomies usually get.
Who can this research help?
Results from this study may help hospital administrators choose ways to help patients learn self-care. Also, findings may help patients and their caregivers decide whether to take part in telehealth ostomy care programs.
What is the research team doing?
The research team is enrolling up to 240 patients ages 21 and older at three hospitals. All patients have lived through cancer and have an ostomy. The team is assigning patients by chance to take part in either the telehealth program or usual care. Patients in the telehealth program receive five weekly online training sessions. The session topics include using ostomy pouches, skin care, special nutrition needs, how diet affects the ostomy, and managing travel with an ostomy. The program also includes information on how to handle feelings, social relationships, and intimacy with an ostomy. Peer supporters take part in the online sessions to answer questions based on their experiences. Between sessions, they are also available to patients via email or phone.
Patients in the usual care group receive regular ostomy care in a clinic or via email or phone, as well as a list of local and regional resources.
The research team is surveying patients in both groups before, right after, and six months after receiving the telehealth program or usual care. The team wants to know if the program helps patients get more involved with their ostomy education and feel more prepared and able to do self-care activities. Also, the team wants to know if the program improves patients’ knowledge of ostomy self-care and quality of life and how it affects use of health services.
An advisory panel of ostomy nurses and patients with an ostomy who have completed the telehealth program are monitoring the study and suggesting improvements. Peer supporters are helping to interpret data and solve problems.
Research methods at a glance
- The Trustees of the University of Pennsylvania
- City of Hope/Beckman Research Institute
- Yale University
Other Stakeholder Partners
- Ostomy Nurses:
- Nancy J. Tallman, RN, BSN, WOCN
- Lesley Hoffman, MSN, CNS, AOC
- Lucinda Pinchot, RN, BSN
- Peer Ostomates:
- Sue Reynolds
- Roger Iverson
- Frank Sova
- Marcie Felner
^ Robert S. Krouse, MD, MS was affiliated with Arizona Board of Regents, University of Arizona when this project was funded.