Oley 2024: Conference Session Highlights & Recordings

Oley 2024 recordings are ready for viewing! There was something for everyone, including general sessions by Dr. Erin Nance and Nick Jackson, NRP, on self-advocacy, Jessica McCaig, LICSW, PMH-C, about quality-of-life research, and a panel on life stages. Explore all recorded sessions at oley.org/2024ConferencePresentations.

A big thank you to corporate partners who planned and sponsored the presentations summarized below. We are grateful for their support. Sponsored presentations offered as a main session, as indicated with an asterisk, were recorded. Breakout sessions were not recorded to provide confidential, interactive participation. For Oley 2025, we are exploring funding to record all general, sponsored and breakout sessions.

Ironwood Pharmaceuticals

*How to Build a Dream Team

Finding knowledgeable care and support can be difficult when living with a severe intestinal condition like short bowel syndrome (SBS). A panel of SBS patients and clinical experts came together to discuss experiences and strategies.

Top tips include: (1) Be upfront with your care team about your goals and what’s important for your quality of life—recognize these may evolve; (2) If you’re struggling to find the right support, turn to your network, including peer support groups; (3) “Expert care” also means a willingness to listen to you and consult with others; (4) Your community healthcare team can connect to a hub of specialists via LIFT ECHO (liftecho.org).

To learn more about patient group services for SBS, download your copy of the SBS Community Guide at oley.org.

Takeda

*Getting to Know Short Bowel Syndrome (SBS) and a Possible Treatment Option

Ann Michalek, MD; Misa B.

In this presentation, Dr. Michalek shared information about short bowel syndrome (SBS), including: risks associated with malabsorption; types of parenteral support; and the role of glucagon-like peptide-2 (GLP2), a hormone produced in the intestine that helps the body absorb nutrients and fluids. After reviewing SBS and its treatment goals, she presented information about a prescription treatment option. Misa, an adult with SBS, shared her experiences with SBS and its treatment. An engaging Q&A closed out the session.

Nestlé Health Science

*Blending at Home: Individualized Tube Feeding Recipes to Meet Your Needs

Robin Cook, MS, RD, LDN; Chef Anna Kim

This session highlighted prepared and commercial blenderized tube feedings (BTF), including a historical overview, evolving research and evidence, and the benefits of BTF. Development of the innovative Blenderized Tube Feeding Recipe Builder was outlined, and participants learned how to partner with their healthcare providers on creating BTF recipes with the tool to meet their individualized nutrition needs. The session featured a live demonstration of the online tube feeding recipe builder program as well as a live recipe creation! Create your free account now to access the tool by visiting compleat.com/blend-at-home.

The Blenderized Tube Feeding Recipe Builder is powered by the Blenderized Diet Recipe Calculator. The Blenderized Diet Recipe Calculator was created by Robin Cook, MS, RD, LDN, and is reproduced with permission under a license from Children’s Hospital of Philadelphia®. No endorsement by Children's Hospital of Philadelphia® or by Robin Cook, MS, RD, LDN, of any Nestlé Health Science brand or product is implied or intended. USE UNDER MEDICAL SUPERVISION.

Takeda

Transitions of Care: Discussing a Roadmap of Milestones for Short Bowel Syndrome (SBS)

Kinberg, MD, MS, MA; Swapna Kakani, MPH; Marie L. Neumann, MA

This panel discussion, which included perspectives from a pediatric gastroenterologist, a patient, and a caregiver, covered key milestones that young people living with short bowel syndrome (SBS) may experience from diagnosis to adulthood. The speakers underscored the pivotal role of transition planning in the clinical care of adolescents and young adults with short bowel syndrome. Visit shortbowelsyndrome.com/Content/pdf/sbs-transitionsof-care-plan.pdf to download a free-of-charge guide from Takeda that covers this important topic in more detail.

Zealand

Importance of Including Patient Exit Interviews in Clinical Trials: Experience with Glepaglutide in EASE SBS-1 Trial

David Mercer, MD, PhD, FRSCS, FACS

Quality of life and additional patient experiences are important measurements to consider in clinical trials. Neglecting to assess individual response eliminates key information when evaluating the overall impact and outcomes of the study treatment. This presentation increased awareness of quality of life outcomes in clinical trials, described the role of exit interviews, provided information from the EASE-1 patient exit interviews, and encouraged trial participation to help move forward this essential trial measurement.

Cardinal Health

Fueling Your Engine with Enteral Nutrition: Making Wise Choices Around Hydration and Feeding

Beth Lyman, MSN, RN, FASPEN, FAAN; and Carol IretonJones, PhD, RDN, LD, CNSC, FAND, FASPEN

Attendees for this session had the opportunity to hear from experienced clinicians, one a nurse and the other a dietitian, on how enterally fed patients can reach and maintain a high quality of life by monitoring their fluid and nutritional intake and participating in an individualized nutrition care plan.

Cardinal Health understands that patients, caregivers, and healthcare providers need evidence-based knowledge and confidence to optimize their treatment and safety while receiving enteral nutrition. Specific recommendations for both pediatric and adult home enteral nutrition patients around hydration and enteral formulas were provided to help patients and families understand the impact of dehydration. The importance of adequate fluid intake in various aspects of daily life was reviewed with emphasis on optimizing both patient and family quality of life.

Every home enteral nutrition patient’s hydration and nutrition needs must be part of an individualized nutrition care plan that is closely monitored by a healthcare provider over time.