Transition of Care from Pediatric to Adult Providers

Real Talk: Eosinophilic Diseases

Description:

Host Ryan Piansky is joined by co-host Mary Jo Strobel, APFED’s Executive Director, to talk with guest, Girish Hiremath, MD, MPH, about the transition of care for people living with eosinophilic disorders from pediatric to adult providers.

Dr. Hiremath is a pediatric gastroenterologist at Monroe Carell Jr. Children’s Hospital at Vanderbilt in Tennessee. His clinical practice focuses on pediatric patients with eosinophilic gastrointestinal disorders and his research concentrates on the epidemiology, diagnosis, and optimal management strategies to advance clinical outcomes in individuals affected by eosinophilic gastrointestinal diseases, in general, and eosinophilic esophagitis, in particular.

In this episode, Ryan and Mary Jo discuss with Dr. Hiremath transition in health care from a pediatric to adult setting, his recently, published research on transition of care, and his interdisciplinary research program at Vanderbilt. Strategies to help facilitate transition and ages to do so, common barriers, and teaching children skills to manage their health are also discussed.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[1:10] Ryan welcomes co-host Mary Jo Strobel. Mary Jo introduces the topic: transition of care from pediatric to adult providers, and the episode guest, Dr. Girish Hiremath. Mary Jo welcomes Dr. Hiremath to the podcast.

[2:33] After medical school in India, Dr. Hiremath served in the Indian Navy. Later, he traveled to the U.S. to pursue a Master’s in Public Health at Johns Hopkins. He completed his pediatric residency at INOVA Fairfax Hospital for Children in Virginia and his pediatric GI fellowship at Texas Children’s Hospital, Baylor College of Medicine.

[3:03] Dr. Hiremath joined Vanderbilt in 2015. He has taken care of numerous children with gastrointestinal problems. He has also had the unique opportunity to focus on eosinophilic gastrointestinal diseases (EGIDs) and build a multi-disciplinary EGID clinic to provide evidence-based care to pediatric EGID patients, and he developed an interdisciplinary research program.

[4:03] Pediatric gastroenterologists will typically treat patients from newborn up to age 18 but there is some variability. Some facilities will treat patients of up to 22 years. The pediatric healthcare provider will look for the right time to transition the pediatric patient to an adult healthcare provider, based on the patient’s readiness and maturity.

[4:44] The pediatric healthcare provider will assess if the patient is stable to transition to an adult healthcare provider. If the patient is not doing well from a disease standpoint, it may not be the time to transition this patient. The provider will hold on, stabilize the patient and get them on a good trajectory to transition to an adult healthcare provider.

[5:41] Chronic diseases, such as EGIDs, are being identified early in life, in the pediatric age group. Many chronic conditions do not have a definitive cure. Pediatric patients with chronic disease carry their disease into adulthood. The transition of care is very important so they continue to receive due care and guidance to manage their condition.

[6:17] The National Alliance to Advance Adolescent Health describes transition of care as the process of moving from a child- or family-centered model of healthcare to an adult- or patient-centered model of healthcare, with or without transferring to a new clinician. It involves planning, transfer, and integration into adult-centered healthcare.

[6:41] A successful healthcare transition program will involve a flow of information through multiple stakeholders. The most important stakeholder is the patient on the verge of adulthood. Some other stakeholders are the parents, patient’s caregivers, healthcare providers, and patient advocacy groups, which play a big role in education.

[7:20] A transition program can be considered a success if it can improve the ability of the youth and young adults to manage their healthcare and effectively use health services. It’s an organized process with an emphasis on getting the patients integrated into adult-centered healthcare from child/parent-centered healthcare.

[8:26] In April 2022, Dr. Hiremath contributed to a publication on transition of care for patients with EGID. The co-authors were a team of experts in EGIDs, including pediatric gastroenterologists, adult gastroenterologists, allergists and immunologists, and experts from Europe and the U.S. on transition of care. It was a great team effort.

[9:11] They reviewed data from other chronic conditions such as inflammatory bowel disease and asthma, where relatively more research has been done on transition of care from pediatric-based to adult-based healthcare. Like EGIDs, these conditions can be debilitating and require long-term therapy and office-based assessments and testing.

[9:40] Understanding approaches used for other medical conditions to transition care can help the EGID field identify opportunities for smoother transfer of care. They found that from the patients’ perspective, there is a lack of awareness, and suboptimal adherence and compliance to medical therapies, one of the critical challenges that have been well-documented in the field.

[10:02] Factors that contribute to these problems are the patients’ young ages and their lack of understanding about the disease’s activity status. For example, there is sometimes a perceived lack of benefit of medication when a patient is feeling well. That age group also exhibits risk-taking behaviors. Plus, education about insurance coverage is helpful.

[10:44] All these factors contribute to understanding how to make transition of care more efficient. There are health-system-related issues, too. The providers have a lack of time to focus on the transition of care and education related to that. There is not enough institutional support. There is little reimbursement for services provided.

[11:17] These are barriers that have been well-described for other chronic conditions that also apply to EGID patients.

[11:40] Ideally, transition of care of EGID patients should focus on the continuity of care through a shared decision-making process.

[11:55] It can be helpful to allow adolescents to be independent in care management decisions and to create a comfortable and supportive environment for transitioning to adult care.

[12:19] The research team also felt that the transition programs for EGID should be a continuing process that facilitates ongoing quality improvement and learning for all stakeholders.

[12:39] Dr. Hiremath and his team were surprised by how little attention has been paid to the transition of care for young EGID patients. Some patients feel good and are not convinced that EoE is a chronic, progressive disease so they do not think much about continued care in their transition to adulthood. There are also provider gaps.

[13:17] The disease process of EoE is not fully understood. Other chronic diseases have been studied longer and the disease process is better known. This highlights a great opportunity for researchers to systematically study transition of care and make important contributions to the field.

[14:34] There are differences between working with a pediatric doctor and an adult provider. Pediatric providers are part of the family-centered care environment where the patient, parents, and providers are engaged in creating a treatment plan. Adult providers are part of the patient-centered care model, interacting directly with patients.

[15:16] EoE presents differently among different age groups. Pediatric providers take care of EoE patients in the inflammatory phase. The adult providers will often see EoE patients when they present with complications such as strictures or food impactions.

[15:51] Ryan recalls how, as a pediatric patient, his parents were involved in his care and also expected him to be involved and to help make decisions about treatments.

[16:47] In his clinical practice, Dr. Hiremath initiates the process of transition of care when a patient is 12 or 13 years old. He starts with a conversation and introduces the concept of getting the child involved in the decision-making process about their ongoing treatment, changes in treatment, and when to do an endoscopy. He encourages the child to participate.

[17:27] Dr. Hiremath encourages patients to educate themselves on the disease. Vanderbilt has the EoE Education Clinic to educate parents and patients. The transition of care is a part of that discussion, about transitioning into adulthood and having an adult healthcare provider.

[18:11] Parents need to research adult gastroenterologists in their area who will be able to assume care of their adolescent child when they are ready to transition. This involves logistics such as travel and insurance coverage. Giving parents time to think through the issues will make the process more seamless.

[19:19] A child’s doctor may be able to recommend an adult provider. In his practice, Dr. Hiremath makes referrals to EoE gastroenterologists within the Vanderbilt system for a seamless transition.[21:15] The goal is a seamless transition from pediatric to adult care. Unfortunately, there’s no single model program that fits all clinics and patients. Structured transition models improve treatment plan adherence and chronic disease control. However, for EGID patients, a diverse group of providers is involved and they all play a critical role.

[22:00] With such a variety of providers, it’s hard to have one standard transition model but there is a specialized-disease-based approach that focuses on engaging adolescent EGID patients and their caregivers, and the stakeholders can facilitate the progression of that care.

[22:18] This approach is often very personnel-heavy. It has to be tailored to the needs of the specific institutions, and it requires considerable resources for implementation and delivery. It cannot be translated from Institution “A” to Institution “B.” Each provider at the institution has to assess what they can offer, can afford, and what is most efficient.

[23:33] Dr. Hiremath tells how he introduces the topic of transition of care with the intent to give the parents and the patient enough time to think through the process of finding an adult provider without being rushed and educate themselves on what the options are.

[26:29] Transitioning from a pediatric provider to an adult provider is an important period. A patient who feels good may think, “I’ve conquered EoE,” ignoring that it’s a chronic progressive disease. Or it may be difficult to locate an adult gastroenterologist who treats EoE patients. These factors contribute to a loss of follow-up.

[27:55] Dr. Hiremath explains some of the concerns he hears from patients transitioning to adult care. They have questions about who to call for prescription refills and to set up their next endoscopy. As they turn 18, they are quite knowledgeable about managing their disease but they need to know a lot more about the logistics of the transition.

[29:11] There is a limited understanding of the differences between symptoms, diagnostic testing, and treatment in children versus adult patients. In the adult world, there are limited allergists and immunologists who focus on EGIDs. There are fewer adult gastroenterologists who focus on EGIDs.

[29:44] There’s a lack of training in transitional care and there are very few transitional programs. The electronic health record platforms of the two institutions may not talk to each other. Information can drop between the cracks. There is limited funding for infrastructure, educational materials, or administrative support for a transition program.

[30:38] In the U.S., the patient’s insurance plays an important role in continued healthcare, specifically for EGID-related care. In some cases, it determines who the patient gets to see, how often they can receive procedures, and what medications and doses are covered. The kind of insurance can dictate the depth of care in the U.S.

[31:39] EGIDs and EoE are chronic, progressive diseases. They are here to stay for a long time and they advance slowly but surely. If medications or treatments are stopped, the patient is at risk of developing complications. In EoE, people with poorly-controlled inflammation are at higher risk of complications.

[32:18] People who are not adherent to their treatment plan are at a higher risk to develop complications, such as strictures or food impactions, requiring urgent or emergent endoscopy. Patients who have inflammation that is not well-controlled tend to withdraw from social circles, and avoid eating with friends. This affects emotional well-being.

[33:53] Dr. Hiremath emphasizes again that EGIDs are chronic, progressive diseases. There will be periods where a patient will be feeling great and asymptomatic or will be compensating for their symptoms. The key is to control inflammation and minimize the future risk of complications. This requires long-term medical treatment.

[34:20] Prepare early to transition to adult care. The child doesn’t have to know every medication, dose, and frequency, but start by explaining to the child about the medication they are taking. Over time, the patient will take ownership. Dr. Hiremath talks to both his patients and their parents.

[36:10] Mary Jo thanks Dr. Hiremath for talking about transition of care and participating in the podcast and she asks Dr. Hiremath about additional resources for patients.

[36:21] Online resources Dr. Hiremath recommends include GotTransition.org, The American Academy of Pediatrics, and sites for other chronic diseases that have information on the transition of care, such as Crohn’s & Colitis Foundation.

[37:58] Ryan shares the APFED links shown below to find resources and specialists who treat eosinophilic-related diseases and to make connections with others impacted with eosinophilic diseases by joining APFED’s online community.

[38:35] Ryan thanks Dr. Hiremath for sharing his research and experiences.

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Girish Hiremath, MD, MPH

Monroe Carell Jr. Children’s Hospital at Vanderbilt

“Transition of care of patients with eosinophilic gastrointestinal diseases: Challenges and opportunities” by Girish Hiremath, Adrian Chapa-Rodriguez, David A. Katzka, Jonathan M. Spergel, Benjamin Gold, Albert J. Bredenoord, Evan S. Dellon, Jeannie Huang, and Sandeep K. Gupta

The National Alliance to Advance Adolescent Health

Gottransition.org

American Academy of Pediatrics

Crohn’s & Colitis Foundation

@Apfedorg on Instagram

Apfed.org/eoe

Apfed.org/specialists

Apfed.org/connections

Real Talk: Eosinophilic Diseases Podcast

This episode is brought to you thanks to the support of our Education Partners Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.

Tweetables:

“There’s a lot of variability here. Typically, pediatric gastroenterologists take care of newborns to children up to 18 years of age. Having said that, that’s not etched in stone. … It’s mostly patient-related factors.” — Girish Hiremath, MD, MPH

“More and more chronic diseases, such as EGIDs, are being identified early in life, in the pediatric age group. Unfortunately, many of these chronic conditions do not have a definitive cure at this time.” — Girish Hiremath, MD, MPH

“Unfortunately, there’s no single standard model that fits all transition programs. Structured transition models have been shown to improve medical treatment plan adherence and disease control.” — Girish Hiremath, MD, MPH

“Efforts are needed to understand what kind of model would be optimal or most efficient for EGID patients.” — Girish Hiremath, MD, MPH

“At the end of the day, it’s their health that they are responsible for.” — Girish Hiremath, MD, MPH

“Maybe we can venture out into those [social media] platforms and capture a young audience so that we’re able to reach them in the language that they speak and connect with them.” — Girish Hiremath, MD, MPH