A New Model of Care for Low Anterior Resection Syndrome

Cancer-free and miserable. Too often that is the experience of patients who develop low anterior resection syndrome (LARS) following sphincter-preserving surgery for rectal cancer.

Despite its profound impact on quality of life, patients have historically had few resources to help them understand or manage this debilitating bowel dysfunction, which may include fecal incontinence, urgency, frequency, clustering of bowel movements, and/or difficulty evacuating.

To address this unmet need, Cleveland Clinic in Florida launched the first multidisciplinary LARS Center in North America. The center brings together surgical expertise, nurse-guided self-management, pelvic floor rehabilitation, nutrition support, and advanced therapies, like transanal irrigation and sacral neuromodulation, to provide comprehensive care for patients with LARS.

The LARS Center opened in 2025 under the leadership of colorectal surgeon Marylise Boutros, MD, and with the support of a donor-funded Cleveland Clinic Catalyst Grant. The center represents the culmination of more than a decade of translational research led by Dr. Boutros to define patients' unmet needs and develop evidence-based interventions that now form the foundation of multidisciplinary LARS care.

A decade of research

An international expert in LARS-focused clinical research and care, Dr. Boutros is Medical Director of the LARS Center and serves as Director of Research for Cleveland Clinic's Digestive Disease Institute in the Florida Region. She also co-leads the LARS Collaborative, an international group of clinicians dedicated to improving care for patients with LARS.

Early in her career, Dr. Boutros recognized a recurring pattern among patients treated for rectal cancer.

"Many patients were suffering with bowel symptoms for years following low anterior resection, often without any resources to support them,” she explains. “This can lead to anxiety, isolation and an overall decrease in quality of life."

Seeking to better understand the gap in survivorship care, Dr. Boutros and a team of researchers conducted a systematic review of online patient education resources. They found that most available information was incomplete, difficult to understand, and offered little practical guidance for patients navigating bowel dysfunction after surgery.

Those findings prompted the development of a comprehensive, 50-page patient education booklet created in collaboration with patients, caregivers, colorectal surgeons and patient education specialists. The booklet provides practical strategies to help patients and clinicians better understand and manage LARS. Subsequent feedback from patient focus groups reinforced the importance of proactive education.

"A lot of what they told us when they saw the booklet is our life would have been totally different had we known all this information before starting our rectal cancer journey," recalls Dr. Boutros. She is currently updating the resource to incorporate lessons learned from years of additional clinical experience and ongoing research.

Patient-centered LARS support

The educational resource became the foundation for a patient-centered LARS support program that was evaluated via a multicenter randomized clinical trial. Published last year in Annals of Surgery, the study enrolled 160 patients undergoing ileostomy closure following rectal cancer surgery.

Participants randomized to the intervention received preoperative counseling from a nurse specially trained in LARS care, access to the patient education booklet, structured self-management education, and continued guidance for one year after ileostomy closure. Compared with standard care, the intervention cohort experienced significant improvements in both LARS symptoms and quality of life.

"We found that LARS symptoms were dramatically improved at month 1 in the nurse-guided and booklet group," says Dr. Boutros, noting that the first month can be miserable for patients because they typically have no idea what's going on in their body. "Their quality of life continued to improve at month 3 and 6, up until the end of the study in month 12."

The trial now serves as the framework for the nurse-guided self-management program offered through Cleveland Clinic's LARS Center based in Weston, Florida, translating years of research into routine clinical care.

“Our goal is to provide meaningful support and effective symptom management strategies that empower patients,” says Claudia DiVenti, DNP, FNP-C, a LARS nurse educator who oversees the center.

More than 100 patients from across the United States have already received care through the program, which has expanded from twice-monthly specialty clinics to weekly appointments in response to growing demand.

Expanding access to LARS care

Dr. Boutros and colleagues have also explored how technology and peer support can help patients better navigate life after rectal cancer surgery. They developed a virtual peer-support platform that combines patient education, moderated discussion forums, survivor mentors, and access to evidence-based LARS resources.

“Rectal cancer survivors who had already worked through their LARS received peer mentor training,” says Dr. Boutros. “We also conducted chat nights via the app with different experts, including a biofeedback therapist, nutritionist, and sex therapist.”

In a multicenter randomized trial conducted to assess the app’s impact, the team enrolled 101 patients with LARS within two years of rectal cancer surgery. Participants received either six months of access to the app or an educational booklet containing the same evidence-based information.

“We found patients using the app experienced significant improvements in quality of life,” reports Dr. Boutros.

A qualitative analysis of participant interactions also provided new insights into the lived experiences and unmet needs of rectal cancer survivors managing LARS. The study, published this year in Diseases of the Colon & Rectum, was recognized as Best Paper at the annual meeting of the American Society of Colon and Rectal Surgeons.

"People loved the app," says Dr. Boutros. "They appreciated being able to ask questions, interact with others who shared similar experiences, and access reliable information when they needed it."

Perhaps most importantly, she says, the platform fostered a sense of community among patients coping with a condition that is often difficult to discuss. "What came out of the peer support work was that patients achieved a sense of normal – a new normal – knowing that there are a lot of other people like them."

The future of LARS care

While the multidisciplinary LARS Center at Cleveland Clinic in Florida represents an important milestone, Dr. Boutros sees it as another step in a broader effort to make evidence-based LARS care accessible to patients everywhere.

As co-lead of the LARS Collaborative, she is working with international colleagues to expand access to the patient education booklet through its translation into multiple languages. The group is also developing a more comprehensive LARS scoring system designed to better capture the full spectrum of symptoms experienced by patients.

Closer to home, Dr. Boutros is focused on expanding the healthcare workforce equipped to care for patients with LARS. She is developing a training program to prepare nurse practitioners to deliver evidence-based self-management support modeled after the program established at Cleveland Clinic in Florida.

"My vision is that we should have LARS nurses just as we have ostomy nurses," says Dr. Boutros. "Patients need someone who understands this condition and can guide them through recovery."

She is also investigating how artificial intelligence can extend that support even further. Working with colleagues, Dr. Boutros is developing an AI-powered chatbot trained on expert-curated LARS resources and patient-generated questions.

"I want all patients with LARS to benefit from the resources we've developed," she adds. "Whether that's through a specialized nurse, educational materials or AI-assisted guidance, the goal is to ensure patients have the knowledge and support they need to regain their quality of life."