Virginia Sun, Ph.D., R.N., M.S.N.
A nationwide, multisite project will test a new way to teach cancer survivors at three facilities how to care for their ostomies.
An ostomy bag or pouch is a prosthetic medical device that collects waste from a surgically diverted biological system such as the colon, small intestine or bladder. The bag is attached to a stoma, which is an opening on the skin’s surface. Ostomy bags must be emptied and changed regularly and the skin around the area kept clean.
The Patient-Centered Outcomes Research Institute-funded project (lead principal investigator: Robert S. Krouse, M.D.,) is targeting recent cancer survivors with new ostomies. The three-year randomized controlled trial is an ostomy self-management training program that aims to coach cancer survivors to care for their ostomies via teleconferencing. The sessions are led by wound-, ostomy- and continence-certified nurses (WOCNs) and peer “ostomates” — people with a history of cancer who have a permanent ostomy.
“Resources are scarce for ostomy survivors,” Sun said. “We are fortunate at City of Hope to have certified ostomy nurses who can support patients’ adjustments to living with an ostomy, but not all institutions have such valuable expertise and resources. Our intervention, delivered in a telehealth approach, can make access to ostomy care resources possible for patients across all geographic locations and settings.”
Typically, if an institution has a WOCN, the WOCN will support educational needs related to ostomy self-care. Even still, “it is sometimes challenging for WOCNs to see patients over multiple sessions — but we know that adjustment is a process and it takes time for survivors to be comfortable with ostomy care,” Sun said. “Having continual support is important. Our intervention can augment the WOCN’s work, but also be a resource for survivors who don’t have access to WOCNs and other resources in their community.”
The study is enrolling cancer survivors and their family caregivers who are at least six weeks postsurgery. Survivors may have a permanent or temporary ostomy.
Ostomies “severely impact” quality of life for patients and families, Sun said. “Physically, patients have to adjust to managing ostomy self-care and ostomy appliances. This is their ‘new normal’ and can be a huge learning curve for many. Without adequate support, patients often resort to trial-and-error approaches to adjust, and in many situations this causes tremendous distress. Socially, because of anxiety related to accidents, as well issues with odors and gas, many survivors limit social activities because they are worried about embarrassing situations in public.”
Patients randomized to the intervention group will attend four telehealth-group sessions with participants from all sites (including, in addition to City of Hope, the University of Pennsylvania and Yale University, with University of Arizona serving as the data and telehealth coordinating site).
Each session will cover information on ostomy appliances and quality-of-life issues (including physical, psychological and social).
“We also coach participants on using problem-solving skills to cope with difficult situations, particularly in public (e.g., unexpected ostomy bag leaks),” Sun said, adding that one session is dedicated to family caregivers. “Our goal is to empower and enable our patients and families so that they have the confidence and skills to manage their ostomies.”
Each site will also have a female and male peer ostomate who will serve as patient consultants for the project. They will also participate in the intervention sessions and serve as a resource for City of Hope patients.
Participants randomized to the usual care (control) group will receive print materials and resources only. All participants will be followed for up to six months postintervention.
“We are interested in understanding whether the intervention improves quality of life, the patient’s confidence in ostomy self-management and patient activation (their level of confidence in participating in overall health care),” Sun said. “We are also studying the impact of the intervention on ostomy-related out-of-pocket and health care costs.”
The long-term goal of the study is to raise awareness of the unique challenges for cancer survivors with ostomies and their family caregivers, and to translate and disseminate the intervention on a national level, Sun said.
“The study has the potential to make ostomy care resources more accessible for patients and families in the communities,” she said. “Many of our patients travel a long distance for their cancer care. With our telehealth approach, patients and families can participate and gain skills and knowledge in the comfort of their homes. The peer group session approach gives survivors the chance to share their own experiences and learn from each other. They are truly the experts, and have the pearls of wisdom that many times we as providers don’t have — simply because we are not living with an ostomy.”