NLM logo

National Information Center on Health Services Research and Health Care Technology (NICHSR)

HSRProj (Health Services Research Projects in Progress)

Information about ongoing health services research and public health projects


Ostomy telehealth for cancer survivors
Investigator (PI): Krouse, Robert S
Performing Organization (PO): (Current): University of Pennsylvania, Penn Medicine, Penn Surgery / (215) 662-2061
(Past): University of Arizona, College of Medicine, Department of Surgery / (520) 626-1913
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2016
Final Year: 2020
Record Source/Award ID: PCORI/CDR-1507-31690
Funding: Total Award Amount: $2,107,824
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Can Telehealth Training with Peer Support Improve Ostomy Self-Care among Bladder and Rectal Cancer Survivors? This research project is in progress. PCORI will post the research findings on this page (the PCORI website) 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. Design: The study design is a randomized controlled trial. Population: The study population is cancer survivors 21 years of age and older who have had a procedure that required an intestinal stoma (fecal or urinary). Interventions/comparators are (a) telehealth ostomy self-management training that includes peer support and (b) usual care. Outcomes: Outcomes are (a) primary: patient activation; and (b) secondary: self-efficacy to perform ostomy self-management behaviors, ostomy-related knowledge, health-related quality of life, medical care utilization, and family financial burden. Timeframe: The timeframe is 6-month follow-up for primary outcome.
Abstract Archived: Post-operative care does not prepare cancer survivors for ostomy self-management, behavior change, psychological support, or healthy living, which are necessary to ensure optimal health-related quality of life. This proposed Ostomy Self-Management Telehealth program, led by ostomy nurses with ostomy "peer-buddies" and patient/caregiver education and support, uses telehealth delivery to improve patients' ability to participate, especially for elderly, rural, inner-city, or poor-health cancer survivors with ostomies. The study will compare patients participating in the telehealth program with patients receiving usual care. The first goal of the study, via our enhanced communication techniques, is to determine if the program improves patient ostomy self-management knowledge and skills and health-related quality of life, and if this improvement continues six months after completing the program. This will be determined using surveys to be completed before the program starts, at the end of the program sessions, and at six months after the end of the program. We think patients participating in the program will have greater improvement than patients receiving usual care, and continue that improvement six months after the end of the program. The second goal of the study is to determine the differences in patients' use of family resources, use of medical care, and ostomy-related family financial burden between the program participants and patients receiving usual care. This information will also be gathered using a survey. We think patients participating in the program will use fewer family resources and medical care than patients receiving usual care, as they use the knowledge and skills learned in the program to better manage their ostomy.

MeSH Terms:
  • Aged
  • Communication
  • Health Services Accessibility
  • Humans
  • Neoplasms /*therapy
  • Ostomy /*methods
  • /psychology
  • Patient Education as Topic /*methods
  • Postoperative Complications
  • Postoperative Period
  • Poverty
  • Quality of Life
  • Rural Population
  • Self Care
  • Survivors
  • Telemedicine /*methods
  • Urban Population
Country: United States || United States
State: Pennsylvania || Arizona
Zip Code: 19104 / 85721
UI: 20163028
CTgovId: NCT02974634
Project Status: Ongoing
Record History: ('2017: Project extended to 2020; PO changed.',) ('2020: Abstract archived to Abstract Archived 1 field and added new abstract.',)