Photo Credit: iStock.com/Deepak Sethi

Patients with ulcerative colitis report better quality of life after IPAA, but bowel symptoms like urgency and incontinence continue to have a negative impact.

Participants with ulcerative colitis reported improved quality of life (QOL) after ileal pouch-anal anastomosis (IPAA), but they also described significant impacts of their bowel symptoms on their work, and other daily activities. They reported frequency, urgency, and incontinence, and many needed to change their lifestyle, especially their daily schedule or diet, researchers reported in Crohn’s & Colitis.

“This study provides an in-depth exploration of the symptoms and experiences most important to patients after an IPAA for inflammatory bowel disease, including normal pouch function and inflammatory conditions of the pouch,” lead study author Edward L. Barnes, MD, MPH tells Physician’s Weekly (PW). “The results highlight the impact of specific symptoms on quality-of-life domains and the lived experience of having an IPAA.”

Dr. Barnes and colleagues conducted semistructured interviews at one academic pouch clinic and inflammatory bowel disease center with 15 patients who had undergone IPAA for ulcerative colitis. They asked the patients with various pouch-related conditions about their post-IPAA experiences and symptoms.

Based on the answers provided, the researchers recommended the development of patient-reported outcomes specific to the symptoms of pouchitis and pouch-related disorders to help define patient experience after IPAA surgery and improve care and assessment of post-IPAA outcomes for patients with ulcerative colitis.

Physician’s Weekly (PW) talked with author Dr. Barnes and inflammatory bowel disease specialist Iana Gueorguieva, MD, who was not involved in the study, about using patient-reported outcomes to improve post-IPAA care.

 Why was it important to do this study? 

 Edward L. Barnes, MD, MPH: Although we seek to improve our understanding of pouchitis and other inflammatory conditions of the pouch, much of our research has focused on outcomes or medication-related studies rather than the patient experience. Patient-centered research should continue to be a focus as we seek to improve outcomes in this population.

Iana Gueorguieva, MD: Understanding the correlation between symptoms and QoL is important. Many patients with IPAA must adjust their overall lifestyle to accommodate their new normal. We clinicians should strive to improve care and base our treatment plans on each patient’s individual needs.

What are the key takeaways for clinicians?

 Dr. Gueorguieva: Restorative proctocolectomy with IPAA for patients with ulcerative colitis has various symptoms and complications. A key takeaway is that many patients have bowel symptoms that correlate with their overall QoL. A better understanding of patient outcomes will lead to improved overall care of this patient population.

Were you expecting these results?

 Dr. Gueorguieva: The results did not surprise me, especially as urgency and incontinence are frequent symptoms that patients discuss in the clinic.

 Dr. Barnes: One thing that surprised me, and a reason I am really glad we did the study, is that although we think we understand the symptoms patients experience, we don’t necessarily understand the experience of having a J-pouch. For example, many patients reported a disconnect in their expectations and counseling around the immediate perioperative period and the immediate experiences after surgery.

Although I care for many patients with pouches and inflammatory conditions of the pouch, I perhaps underestimated the unique ability of patients to relate and compare symptoms of ulcerative colitis (prior to colectomy) to having an ostomy and ultimately to having a pouch. This unique set of experiences allows patients to reflect in a way that many other patients and their healthcare professionals cannot.

How could the findings impact patient care? 

 Dr. Barnes: In the immediate future, I think this study and future work can begin to lay the groundwork for pouch-specific and perhaps pouchitis-specific patient-reported outcomes that may improve our ability to assess the effectiveness of therapies and the natural history of patients after IPAA surgery. Making patients partners in these studies is key, and patient-centered outcomes will allow us to better assess the impact of interventions and our approaches to care.

 Dr. Gueorguieva: The overall goal is to improve our understanding of each patient’s specific symptoms and needs and elevate the overall care of this population.

Are any strengths or limitations especially noteworthy? 

 Dr. Gueorguieva: While we are used to having evidence-based randomized control trials, qualitative research helps us point to gaps in the standard assessment of patients and the impacts of IPAA on QoL. This study was based in one academic center, and although it included a variety of normal and pouch-related complications, patient experiences in community-based centers or across different patient demographics may differ.

 Dr. Barnes: Although we utilized a rigorous methodology in this initial study, these remain the experiences of patients treated at one multidisciplinary pouch clinic and IBD center. Expanding these efforts to larger populations from a variety of research centers (with study leads unaffiliated with the patient populations) remains a goal to improve our understanding of the lived experience of patients after IPAA surgery, particularly those with pouchitis.

 What further research is needed in this area?

 Dr. Barnes: We need to continue to develop true patient-reported outcome measures for patients with pouchitis and inflammatory conditions of the pouch. This study and our recent work evaluating the use of patient-reported outcome measures after IPAA surgery provide a foundation for these future studies. But a great deal of work remains to be done.

Dr. Gueorguieva: How do we improve the QoL for patients with expected and known IPAA complications, rather than having them adjust to a new normal? How can we better understand the symptoms and outcomes of patients with a normal pouch versus patients with pouch complications?