UOAA Research Results Are Published Showing Patient Rights Are Being Utilized but Gaps in Care Being Provided Exist
By Jeanine Gleba, UOAA Advocacy Manager
Everyone in the United States has the right to receive high quality care. However, the ostomy community continues to be plagued by poor quality care due to lack of trained medical professionals such as certified ostomy care nurses. Many caring for a person with an ostomy do not have the education related to the physical, emotional or quality of life needs of someone living with an ostomy. Thus, those in the ostomy community often feel a lack of compassion and respect regarding their care. UOAA receives hundreds of calls and email inquiries annually, many of them desperately seeking assistance for proper ostomy care.
It is a primary mission of UOAA advocates to assure that quality ostomy care occurs universally across all health care settings.
In 2019 UOAA embarked on a research journey to examine best-in-practice care for ostomy patients through the utilization of the Ostomy and Continent Diversion Patient Bill of Rights (PBOR), which are evidence-based for quality ostomy care. We wanted to know if these written standards are the accepted practiced norms for treatment and care for ostomates.
Together let’s establish a culture that promotes the highest quality care for ostomates.
We collected data from both ostomy surgery patients (412 respondents) and medical clinicians (195 respondents) such as Wound Ostomy Continence nurses. The organization is thrilled to announce the release of our research results that were published in the September/October 2022 issue of the Journal of Wound Ostomy Continence Nursing.
There were three research questions that the study investigated
- Is UOAA’s PBOR being used to care for ostomy patients analyzed from the perspective of patients and clinicians?
- Do patients and clinicians perceive that use of the PBOR is beneficial to ostomy patient health outcomes?
- Have clinicians witnessed positive patient health outcomes (e.g., decreased readmissions for dehydration, feeling better prepared to care for the ostomy)?
Promising findings showed that, for the clinicians familiar with the PBOR, more than half reported that the PBOR was being utilized to inform ostomy care1. Additionally, a majority of both patients and clinicians indicated that consistent use of the PBOR may be beneficial for ostomy patient health outcomes such as prevention of Emergency Department visits1. However, analysis identified a significant gap in specific standards of care being provided by clinicians versus the care patients reported they received1. For example, 22.5% of the patient population reported engaging in a discussion on the emotional impact of the ostomy surgery versus 65.6% of the clinician respondents reported it was provided1. Another notable difference was the number of patients (55.1%) who reported receiving educational materials specific to ostomy care versus 82.5% of clinicians reported providing educational materials.
The study concluded that there are discrepancies between PBOR standards of care being provided by clinicians versus the care patients reported they received. Further awareness and wider utilization of the PBOR are needed to provide best care to patients living with an ostomy1.
Advocacy work is ongoing and quality health care is a team effort. Together let’s establish a culture that promotes the highest quality care for ostomates. When quality of care is not provided, people should speak up. The more people that demand these rights and the more medical professionals who perform these standards of care, the more improvements will be realized in patient care and outcomes.
1.Gleba, Jeanine; Miller, Leslie Riggle; Peck, B. Mitchell; Burgess-Stocks, Joanna. United Ostomy Associations of America's Ostomy and Continent Diversion Patient Bill of Rights: An Examination of Best-in-Practice Care for Ostomy Patients. Journal of Wound, Ostomy and Continence Nursing: September/October 2022 - Volume 49 - Issue 5 - p 462-468 doi: 10.1097/WON.0000000000000909