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 

  1. Is UOAA’s PBOR being used to care for ostomy patients analyzed from the perspective of patients and clinicians?
  2. Do patients and clinicians perceive that use of the PBOR is beneficial to ostomy patient health outcomes?
  3. 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

 

A research study about the benefits of perioperative self-management support for ostomates

 

Ostomates are not only dealing with intestinal concerns but are also at risk for a multitude of complications. Data shows that 38% of ostomy patients find themselves back in the emergency room or being admitted within the first 90 days post operatively [1]. This is one of the highest rates of readmission when compared to other types of surgery. The most common cause for re-admission is dehydration, at approximately 40% of post ileostomy readmissions [2]. We also know that 84% of ostomy patients develop skin issues. The causes of these can be chemical, mechanical, or microbial, and possibly avoidable. Ostomates also have significantly increased healthcare costs, especially when affected by peristomal skin complications, and leakage [2]. It is known that 25% of ostomates develop renal failure within two years. The complications these patients encounter require 7x more outpatient visits than the average patient. And 29.1% of ostomates experience readmission which costs approximately $16,000 per patient [1]. These statistics show that specialized care for these patients is imperative to improving patient outcomes in this patient population.

A recent study published by the American Society of Colon and Rectal Surgeons shows how one company, 11 Health and Technologies, is utilizing a novel care approach to improve the quality of life and outcomes in this type of patient. The company developed alfred: SmartCare, a unique care model designed to meet the specialized need of ostomates. The program consists of a SmartBag and SmartWafer, mobile application, patient coaches (who were/are also ostomates, trained to support this type of patient) and the nursing team. The patient wears the SmartBag and SmartWafer, which submits data to the mobile application and clinical dashboard. The data is visible to the patient, their coach, the nursing team and the patient’s clinicians to be used to identify trends and abnormalities in the values. The patient can see how much output they have expressed and what the temperature is of their peristomal skin. These data points can help to curtail oncoming hydration issues or infections. When abnormalities are identified, the coach can work with the patient to provide education and can escalate issues to the nursing team for medical guidance.

In the study, the outcomes of 66 new ostomates from 19 different states were monitored for the first 30 post-operative days. The study showed that close monitoring of ostomy output volume as well as perioperative self-management support can significantly reduce the rate of hospital readmissions in the first 30 days after ostomy surgery.

Patients and healthcare providers should be open to the use of innovative programs that use remote monitoring along with telehealth, as they can be beneficial in improving the outcomes of patients in the immediate post-operative period.

To read the full study, visit the Diseases of the Colon & Rectum online at: https://journals.lww.com/dcrjournal/Citation/2020/12000/Improved_30_Day_Surgical_Outcomes_in_Ostomates.17.aspx

Editor’s note: This article is from one of our digital sponsors, 11 Health and Technologies. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

[1] Tyler, J. A., Fox, J.P., Dharmarajan, S., Silviera, M. L., Hunt, S. R., Wise, P. E., Mutch, M. G. (2014). Acute health care resource utilization for ileostomy patients is higher than expected. Diseases of the Colon & Rectum57(12), 1412-1420.

[2] Justiniano, C. F., Temple, L. K., Swanger, A. A., Xu, Z., Speranza, J. R., Cellini, C., Salloum, R. M., & Fleming, F. J. (2018). Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors. Diseases of the colon and rectum61(11), 1297–1305. https://doi.org/10.1097/DCR.0000000000001137

[3] Taneja, C., Netsch, D., Rolstad, B. S., Inglese, G., Eaves, D., Oster, G (2019). Risk and economic burden of peristomal skin complaints following ostomy surgery. Journal of Wound, Ostomy and Continence Nursing, 46(2), 143-149.

[4] Fearn, Robert I. M.D., M.R.C.P.1,2; Gorgun, Emre M.D.3; Sapci, Ipek M.D.3; Mehta, Saahil N. M.D.2; Dinh, Binh B.S.2; Yowell, Quinn V. M.S.2; Eisenstein, Samuel M.D.4 (2020). Improved 30-Day Surgical Outcomes in Ostomates Using a Remote Monitoring and Care Management Program: An Observational Study. Diseases of the Colon & Rectum: December 2020 – Volume 63 – Issue 12 – p e581-e586.