Best-in-Practice Care for Ostomy Patients
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
This was the first time I ever looked at the UOAA PBoR’s.
I would say I didn’t sense a plan by anyone but my wife’s osteomyelitis was the result of unexpected surgery which caught us by surprise and that in conjunction with mild ALZ.
The Ostomy nurses were great in providing the initial support and I have called them occasionally and they have continued to be information resources and supporters as the past three years have passed.
I did view some online resources, but once we established our routines, we have been reluctant to change (or even seek additional information) unless something new or different presented itself.
I think my greatest concern is: lack of knowledge or preparation for problems that can occur with long term ostomy care and if there are hidden or expected “things” that I need to know about and need/or need to be prepared for.
Somethings I could really use is:
A) something that long term ostomy care for the aging.
C) what are important patient remarks or provider observations that should trigger a call for assistance (i.e. When I see something slightly different (from normal) – when should I be concerned? – like tissue that appears and begins to bleed when contacting it (Ostomy nurses gave me Silve nitrates swabs that quickly resolved the issue – but it prompted cancelling a vacation trip)
I have a urotony and ostomy I had surgery over 3 years ago I had rectal cancer and bladder cancer I’m doing good so far I’ve learned to live with my changes to my body.i hope all patients get good care.speak up to doctors nurses hospital administration and to your insurance company and if need be contact your state department of health remember they OVER see the insurance company on denials and if need be file a lawsuit.i will help anyone who email me text me or call me
My next step is a colostomy. Trying to get some info from people have experienced one.
I want to tell each and everyone who’s story I have just listened to ,that God loves you all and so do I , my heart hurt so much listening to your stories which is your daily life, and to hear those who suffer yet are thankful , and that is so beautiful to hear , I took from all that I read from all your stories that you so bravely shared ,I realized that not to get down on myself when I feel not so good that there is folks out there who suffer in silent ,I promise you all, I from this day on I will pray for you and those who go through what you all are going through ,I never even gave thought of this subject of Ostomy Patients and for that I am ashamed and sorry but after reading your stories I promise not to forget to pray for what your going through. Today 11/2/ 2022 I was so scared for 10days over some special tests I had done and praise God and I have, they came back clear , God is faithful ! GOD BLESS YOU ALL ,and I will keep my prayers coming your way . Be blessed and no that I care . Xoxo ,Dottie H. GA.