After attending the session, Special Considerations in the Management of Young(er) Patients with IBD… And What They Can Teach Their Elders, I am inspired to hear the radicalization of care that is being conceived for pediatric IBD. Dr. Sandra C. Kim, MD, the Director of the IBD Center at the PMC Children’s Hospital of Pittsburgh, broke down the session into three parts. The first talked about the precision of medicine in Very-Early Onset IBD (VEOIBD), the second was on nutritional therapy, and lastly, the third focused on psychosocial care for young IBD patients. This is vital information as there is an increase in annual incidences of IBD pediatric diagnoses; in fact, there has been a 50% increase in children with IBD over the past decade. Children with IBD also deal with disproportionately greater costs than adults and accumulate a higher cost per lifetime. There is great importance in centering pediatric GI and adding nuance to the conversation around holistic care. Following is the breakdown of the three-part session Dr. Kim presented.
- “What I really needed to know, I learned in kindergarten: Precision medicine in VEOIBD”
o VEOIBD includes patients that are less than 6 years old and often involves a genetic disorder. It is also the fastest growing demographic in IBD patients.
o Younger patients, those with a stronger disease, and those with family history tend to have some form of Monogenic IBD, which can impact the therapy given. It is important to have this distinction made to better choose between therapy options.
o For evaluations, GI doctors will start by lab testing, searching for complete blood count and checking inflammatory markers. Other areas of interest and evolution may include Immunological studies, genetic evaluation, and histology if needed. If the disease is more complex, there could be an incorporation of other specialists including Immunology, pathology, or surgeons.
- “Let thy food be thy medicine: Nutritional therapy”
o Exclusive Enteral Nutrition (EEN) is a no-solid food, formula–based diet. According to ECCO/ESPGHAN guidelines, EEN is recommended as a first choice for induction therapy for children with mild to moderate Crohn’s Disease, especially for those patients who have not finished growing.
o Dr. Kim also provided a study specifically done comparing a combination of the Crohn’s Disease Exclusion Diet (CDED)–which includes removing animal fat, wheat, dairy, red meat, emulsifiers, maltodextrin, and carrageenan–and Partial Enteral Nutrition vs. EEN by itself. The study showed that the CDED plus Partial Enteral Nutrition combination had higher rates of remission and higher tolerance rates..
o However, as we know, timed diets as intense as these are often not sustainable. Dr. Kim points out there are real-life barriers to access nutritional diets such as these two. The biggest barriers include the time and energy being put into them and the cost of them. They are currently predominantly seen used by families in a higher socioeconomic status. I am really grateful that Dr. Kim brought up the importance of access to care and that doctors need to be in tune to be sure that the care they are providing or suggesting is truly accessible to their patients.
- “It takes a village: Collaborative IBD Care”
o Depression is present in the majority of IBD pediatric patients, and depression is increased when disease is active and steroid is used as a treatment.
o Children with IBD are shown to have a lower quality of life and social interactions are greatly impacted. Anywhere from ⅓ to ½ of children with IBD have limitations in daily life activities.
o The greatest gap in pediatric GI care noted was in psychosocial care. Specifically, patients felt there was no person to discuss transition between adult and pediatric GI treatment with. This experience is one I am sure many of us can relate to. There needs to be proactivity from both pediatric GI and adult GI providers and the process should be started well in advance.
o Other tools for successful transitioning include: utilization of checklists, educational tools, actively engaging patients and families, and written health care transition plans. Also, the dedication of clinics for adolescent patients.
o Dr. Kim offers for GI clinicians to ask the tough questions and have a comprehensive medical summary ready to go.
o Both adult and pediatric MD’s should anticipate existing gaps of knowledge and eagerly teach self-management skills to patients.
As a patient advocate with CCYAN and having received a diagnosis at a young age myself, this session gave me so much hope, specifically in regards to the acknowledgement of the impact that IBD has on a child's psychosocial development as well as validation of the toll that IBD has on a child’s mental health. MD’s, such as Dr. Kim, hear our stories and advocacy work and remind us why we do what we do.