Ostomy and Continent Diversion Patient Bill of Rights: Research Validation of Standards of Care.

An estimated 725,000 to 1 million people are living with an ostomy or continent diversion in the United States, and approximately 100,000 ostomy surgeries are performed each year in the United States. As a result of ostomy surgery, bodily waste is rerouted from its usual path because of malfunctioning parts of the urinary or digestive system. An ostomy can be temporary or permanent. The ostomy community is an underserved population of patients. United Ostomy Associations of America, Inc (UOAA), is a nonprofit organization dedicated to promoting quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. Over the years, UOAA has received hundreds of stories from people who have received inadequate care. In the United States, patients receiving medical care have certain health rights. For ostomy and continent diversion patients, these rights are known as the "You Matter! Know What to Expect and Know Your Rights-Ostomy and Continent Diversion Patient Bill of Rights" (PBOR). These rights define and provide a guide to patients and health care professionals as to what the best practices are when receiving and providing high-quality ostomy care during all phases of the surgical experience. This includes preoperative to postoperative care and throughout the life span when living with an ostomy or continent diversion. In 2020, the National Quality Forum released "The Care We Need: Driving Better Health Outcomes for People and Communities," a National Quality Task Force report that provides a road map where every person in every community can expect to consistently and predictably receive high-quality care by 2030 (thecareweneed.org). One of the core strategic objectives this report stated is to ensure appropriate, safe, and accessible care. Actionable opportunities to drive change include accelerating adoption of leading practices. The adoption of the PBOR best practices will drive the health care quality improvement change needed for the ostomy and continent diversion population. There are concerns in the ostomy and continent diversion communities among patients and health care professionals that the standards of care outlined in the PBOR are not occurring across the United States in all health care settings. There are further concerns stated by health care professionals that the patient-centered recommendations outlined in the PBOR need to be strengthened by being supported with available published health care evidence. The work of this task force was to bring together members of UOAA's Advocacy Committee, members of the Wound, Ostomy, and Continence Nurses Society (WOCN Society) Public Policy and Advocacy Committee, and representatives from surgical organizations and industry to create a systemic change by validating through evidence the Ostomy and Continent Diversion PBOR. Through the work of the task force, each component of the PBOR has been substantiated as evidence-based. Thus, this article validates the PBOR as a guideline for high-quality standards of ostomy care. We show that when patients receive the standards of care as outlined in the PBOR, there is improved quality of care. We can now recognize that until every ostomy or continent diversion patient receives these health care rights, in all health care settings, will they truly be realized and respected as human rights in the United States and thus people living with an ostomy or continent diversion will receive "the care they need."

United Ostomy Associations of America's Ostomy and Continent Diversion Patient Bill of Rights: An Examination of Best-in-Practice Care for Ostomy Patients.

PURPOSE: The purpose of this study was to examine best practices through utilization of United Ostomy Associations of America's (UOAA's) Ostomy and Continent Diversion Patient Bill of Rights (PBOR) from the perspective of patients and clinicians. DESIGN: Cross-sectional, comparative design. SUBJECTS AND SETTING: The sample comprised 412 patients with ostomies (colostomy, ileostomy, urostomy) and continent diversions (such as J-pouch) and 195 clinicians (physicians, nurses, nurse assistants) residing in the United States. All patients underwent surgery within the United States. Almost half of participants (n = 196/412; 47.6%) had surgery within 5 years of data collection. METHODS: Participants were recruited between 2019 and 2020. Patient data were collected from UOAA's national conference and affiliated ostomy support groups. Clinician data were collected at the 2019 National WOCN Society Conference and through affiliated nursing and medical professional societies. Participants completed a self-administered online or printed survey; items focused on the Ostomy and Continent Diversion PBOR and standards of ostomy care. RESULTS: Among clinicians familiar with the PBOR, 54% (n = 58/106) reported UOAA's PBOR was being used to inform ostomy care. When analyzing the full sample of both clinicians and patients, we found that less than 13% (n = 25/195) of clinicians and 5% (n = 20/412) of patients reported that all 16 of the recommended standards of care outlined in the PBOR were incorporated into ostomy care. Analysis also revealed differences between patients' and clinicians' reports of provision of 14 of the 16 PBOR components. They include a discussion on emotional impact of the ostomy surgery, instructions on troubleshooting potential difficulties with the ostomy, provision of educational materials, and providing information for ordering supplies. CONCLUSIONS: Study findings showed discrepancies between the PBOR standards of care being provided by clinicians versus the care patients reported they received. Findings also indicated variability in the consistency of delivering all components of the PBOR. We assert that further awareness and wider utilization of the PBOR in every health care setting in the United States are needed to provide best care to patients living with an ostomy.