Skip to main content
Patient-Centered Outcomes Research Institute
Patient-Centered Outcomes Research Institute
  • Blog
  • Newsroom
  • Find It Fast
  • Help Center
  • Subscribe
  • Careers
  • Contact Us

PCORI

Patient-Centered Outcomes Research Institute

Search form

  • About Us
    Close mega-menu

    About Us

    • Our Programs
    • Governance
    • Financials and Reports
    • Procurement Opportunities
    • Our Staff
    • Our Vision & Mission
    • Contact Us

    Fact Sheets: Learn More About PCORI

    Download fact sheets about out work, the research we fund, and our programs and initiatives.

    Find It Fast

    Browse through an alphabetical list of frequently accessed and searched terms for information and resources.

    Subscribe to PCORI Email Alerts

    Sign up for weekly emails to stay current on the latest results of our funded projects, and more.

  • Research & Results
    Close mega-menu

    Research & Results

    • Explore Our Portfolio
    • Research Fundamentals
    • Research Results Highlights
    • Putting Evidence to Work
    • Peer Review
    • Evidence Synthesis
    • About Our Research

    Evidence Updates from PCORI-Funded Studies

    These updates capture highlights of findings from systematic reviews and our funded research studies.

    Journal Articles About Our Funded Research

    Browse through a collection of journal publications that provides insights into PCORI-funded work.

    Explore Our Portfolio of Funded Projects

    Find out about projects based on the health conditions they focus on, the state they are in, and if they have results.

  • Topics
    Close mega-menu

    Topics

    • Addressing Disparities
    • Arthritis
    • Asthma
    • Cancer
    • Cardiovascular Disease
    • Children's Health
    • Community Health Workers
    • COVID-19
    • Dementia and Cognitive Impairment
    • Diabetes
    • Kidney Disease
    • Medicaid
    • Men's Health
    • Mental and Behavioral Health
    • Minority Mental Health
    • Multiple Chronic Conditions
    • Multiple Sclerosis
    • Obesity
    • Older Adults' Health
    • Pain Care and Opioids
    • Rare Diseases
    • Rural Health
    • Shared Decision Making
    • Telehealth
    • Transitional Care
    • Veterans Health
    • Women's Health

    Featured Topic: Women's Health

    Learn more about the projects we support on conditions that specifically or more often affect women.

  • Engagement
    Close mega-menu

    Engagement

    • The Value of Engagement
    • Engagement in Health Research Literature Explorer
    • Influencing the Culture of Research
    • Engagement Awards
    • Engagement Resources
    • Engage with Us

    Engagement Tools and Resources for Research

    This searchable peer-to-peer repository includes resources that can inform future work in patient-centered outcomes research.

    Explore Engagement in Health Literature

    This tool enables searching for published articles about engagement in health research.

    Research Fundamentals: A New On-Demand Training

    It enables those new to health research or patient-centered research to learn more about the research process.

  • Funding Opportunities
    Close mega-menu

    Funding Opportunities

    • What & Who We Fund
    • What You Need to Know to Apply
    • Applicant Training
    • Merit Review
    • Awardee Resources
    • Help Center

    PCORI Funding Opportunities

    View and learn about the newly opened funding announcements and the upcoming PFAs in 2021.

    Tips for Submitting a Responsive LOI

    Find out what PCORI looks for in a letter of intent (LOI) along with other helpful tips.

    PCORI Awardee Resources

    These resources can help awardees in complying with the terms and conditions of their contract.

  • Meetings & Events
    Close mega-menu

    Meetings & Events

    • Upcoming
    • Past Events

    PCORI Webinar: February 2, 2pm ET

    Hear from PCORI leaders about ways to get involved in PCOR, improvements to our funding opportunities, and more. Register

    Confronting COVID-19: A Webinar Series

    Learn more about the series and access recordings and summary reports of all six sessions.

    2020 PCORI Annual Meeting

    Watch recordings of all sessions, and view titles and descriptions of the posters presented at the virtual meeting.

You are here

  • Research & Results
  • Explore Our Portfolio
  • Can Telehealth Training with Peer Sup...

Can Telehealth Training with Peer Support Improve Ostomy Self-Care among Bladder and Rectal Cancer Survivors?

Sign Up for Updates to This Study  

Project Summary  

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

Design Elements Description
Design Randomized controlled trial
Population Cancer survivors 21 years of age and older who have had a procedure that required an intestinal stoma (fecal or urinary)
Interventions/
Comparators
  • Telehealth ostomy self-management training that includes peer support
  • Usual care
Outcomes

Primary: patient activation

Secondary: self-efficacy to perform ostomy self-management behaviors, ostomy-related knowledge, health-related quality of life, medical care utilization, family financial burden

Timeframe 6-month follow-up for primary outcome

Related Articles

Journal of Cancer Survivorship

Healthy behaviors are associated with positive outcomes for cancer survivors with ostomies: a cross-sectional study

Supportive Care In Cancer

Cancer survivors' challenges with ostomy appliances and self-management: a qualitative analysis

Contemporary Clinical Trials

Ostomy telehealth for cancer survivors: Design of the Ostomy Self-management Training (OSMT) randomized trial

Project Details

Principal Investigator
Robert S. Krouse, MD, MS
Project Status
In PCORI Peer-Review Process
Project Title
Ostomy Telehealth for Cancer Survivors
Board Approval Date
April 2016
Project End Date
November 2021
Organization
The Trustees of the University of Pennsylvania ^
Year Awarded
2016
State
Pennsylvania
Project Type
Research Project
Health Conditions  
Cancer
Brain Cancer
Ovarian Cancer
Lung Cancer
Liver Cancer
Intestinal Cancer
Colorectal Cancer
Cervical Cancer
Breast Cancer
Uterine Cancer
Anal Cancer
Skin Cancer
Gastrointestinal Disorders
Intervention Strategies
Behavioral Interventions
Telemedicine
Other Health Services Interventions
Technology Interventions
Training and Education Interventions
Funding Announcement
Communication and Dissemination Research
Project Budget
$2,107,824
Study Registration Information
HSRP20163028
NCT02974634

Partners

Patient/Caregiver Partners

  • 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.

Page Last Updated: 
December 4, 2020

Research & Results

  • Explore Our Portfolio
  • Research Fundamentals
  • Research Results Highlights
  • Putting Evidence to Work
  • Peer Review
  • Evidence Synthesis
  • About Our Research

About Us

  • Our Programs
  • Governance
  • Financials and Reports
  • Procurement Opportunities
  • Our Staff
  • Our Vision & Mission
  • Contact Us

Research & Results

  • Explore Our Portfolio
  • Research Fundamentals
  • Research Results Highlights
  • Putting Evidence to Work
  • Peer Review
  • Evidence Synthesis
  • About Our Research

Engagement

  • The Value of Engagement
  • Engagement in Health Research Literature Explorer
  • Influencing the Culture of Research
  • Engagement Awards
  • Engagement Resources
  • Engage with Us

Funding Opportunities

  • What & Who We Fund
  • What You Need to Know to Apply
  • Applicant Training
  • Merit Review
  • Awardee Resources
  • Help Center

Meetings & Events

February 2
PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
February 9
Board of Governors Meeting: February 9, 2021
February 11
Advisory Panel on Patient Engagement Winter 2021 Meeting

PCORI

Footer contact address

Patient-Centered Outcomes
Research Institute

1828 L Street, NW, Suite 900
Washington, DC 20036
Phone: (202) 827-7700 | Fax: (202) 355-9558
[email protected]

Subscribe to Newsletter

Twitter Facebook LinkedIn Vimeo

© 2011-2021 Patient-Centered Outcomes Research Institute. All Rights Reserved.

Privacy Policy | Terms of Use | Trademark Usage Guidelines | Credits | Help Center