Abstract
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.