Pediatric Guidelines Update Project

September 2022

Submitted by: Kathleen Adams, project coordinator and Wojtek Wiercioch, supporting guideline methodologist

CVSA is directly involved with the ongoing project to update the 2008 Consensus Statement for pediatric patients who have Cyclic Vomiting Syndrome.

Li B U.K., Chelimsky G, Boles R, et al: North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition: consensus statement on the diagnosis and management of cvs. J Pediatr Gastroenter Nutr, Sep;47(3):379-93, 2008

The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) is the academic sponsor of both the original project and the current update.

The original document played a crucial role in doctors around the world being able to diagnose, treat, and manage CVS. That document is focused on pediatric care and has also served to aid adult diagnosis and treatment as well. In June of 2019, adult guidelines were published after a 5 year development process. Both publications are available on the CVSA website. Needless to say, with the pediatric guidelines now being 14 years old, treatment for CVS has changed with lifestyle changes, newer medications, supplements, and devices, like the auricular stimulator.

After 4 years, the committee has realized the project is taking longer than hoped for. The estimated completion date is now early summer of 2023. The 4 to 5-year long process is indicative of how rigorous and time-consuming this academic endeavor is. The summary paraphrased here by staff methodologist Wojtek Wiercioch further explains the extended time needed for completion.

We have an unanticipated large volume of literature to screen for the number of guideline questions we have prioritized. We are additionally doing extra searches for the literature on migraine to see if that can inform our questions about CVS. We are self-managing the literature reviews and don’t have the support of a separate evidence synthesis team which can be as large as 5-10 supporting researchers and research librarians.

The panel directed by the supporting guideline methodologist are currently completing the systematic literature reviews that provide guideline recommendations that are to be written. A formal prioritization process has been completed to select a set of 18 healthcare questions for the foundation material. This covers diagnosis, prophylaxis, emergency department care, abortive treatment, lifestyle interventions, and management of comorbidities. Six systematic reviews are being conducted to gather all available evidence within these topic areas.

While the six reviews have entailed screening through a large volume of literature, identified research evidence specific to pediatric CVS has been sparse. It has been decided to conduct an additional systematic review on management of pediatric migraine that can indirectly inform the outcome of recommendations.

This rigorous process ensures that the resulting guideline is based on the best available evidence, meets accepted standards from the Institute of Medicine and Guidelines International Network, and maintains trustworthiness for the audience and users of the guideline. In the next steps, the panel will complete evidence-to-decision frameworks that will help guide the process of formulating recommendations. This exhaustive work is designed to include scrutiny of available research evidence and equally important input from the panel of experts.

Guideline development is quite costly, approximately $30,000. In the cost is $20,000 for the described GRADE method (Grading of Recommendations, Assessment, Development and Evaluation) – a systematic literature review staff and training, McMaster University, Hamilton, Canada. Also ‘open access’ costs for publication is significant to ensure publication availability to anyone. The committee continues to meet virtually to avoid travel and lodging costs.

CVSA continues to request donations from members and other philanthropists for this critical international work.

The committee members:

CHAIR – Katja Kovacic, M.D., Associate Professor Pediatrics-GI, Medical College Wisconsin; Heidi Gamboa, D.O., Assistant Professor – Pediatrics GI -Nicklaus Children’s Hospital – Miami; Amy Gelfand, M.D., Associate Professor – Pediatric Neurology, University of California San Francisco & Weill Institute for Neurosciences; Robert Issenman, M.D., Professor Pediatrics, McMaster University; B U.K. Li, M.D., Professor of Pediatrics, Medical College of Wisconsin; Sumit Parikh, M.D., Associate Professor Neurology/Metabolics, Case Western Reserve/Cleveland Clinic; John Rosen, M.D., Professor of Pediatrics-GI, University of Missouri, Kansas City School of Medicine; Sally Tarbell, Ph.D., Professor of Psychiatry and Behavioral Sciences, Northwestern University, Feinberg School of Medicine; Kathleen Adams, RN, BSN, President Emerita Cyclic Vomiting Syndrome Association, patient representative.

Submitted by: Kathleen Adams

CVSA is directly involved with the ongoing project to update the 2008 Consensus Statement for pediatric patients who have Cyclic Vomiting Syndrome. CVSA is the sole financial sponsor for the development of the update. The Guidelines were originally published in 2008 in the Journal of Pediatric Gastroenterology and Nutrition. The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) is the academic sponsor of both the original project and the current update.

The update committee is headed by Katja Kovacic, M.D., Associate Professor of Pediatric Gastroenterology at the Medical College of Wisconsin. Dr. Kovacic is the Director of the Pediatric CVS Clinic at Children’s Wisconsin and a Primary Medical Advisor to CVSA.

The original document played a crucial role in doctors around the world being able to diagnose, treat, and manage CVS. The 2008 publication is focused on pediatric patients but until June of 2019 the document aided in adult diagnosis and treatment as well. In June of 2019, adult guidelines were published after a 5 year development process. With the adult treatment guidelines now in place, CVSA medical advisors agreed that it was past time to update the pediatric guidelines.

Venkatesan T, Levinthal D, Tarbell S, Jaradeh S, Hasler W, Issenman B, Adams K, Sarosiek I, Sharaf R, Sultan S, Li B U.K. Guidelines on management of cyclic vomiting syndrome (CVS) in adults. Neurogastroenterology and Motility, 31 (supp2), June 2019

After 3 years, the committee is nearing the end of this project. They are hoping for publication in mid 2022. As many of you know from the first 5-year long process and the recent 4-year process for the adult guidelines, writing formal treatment guidelines a rigorous and time-consuming academic endeavor. The process is also quite costly. Again, CVSA is the financial sponsor of this project. With help from donors like you, CVSA solely financed the 2008 guidelines, the adult guidelines project published in June of 2019 and now the current guideline update.

Therefore, we are asking for your help supporting current work in bringing up to date treatment and diagnosis information to the medical professionals, patients and families around the world.

Estimated Costs for the pediatric guidelines include, but are not limited to:

$10,000 – $15,000 for publication and open access. Open access will ensure that anyone can have access to this document.
$20,000 Guideline – GRADE method (Grading of Recommendations, Assessment, Development and Evaluation) systematic review staff and training, McMaster University, Hamilton, Canada

In person meeting costs were non-existent due to COVID restrictions on travel. 100% of your donation to the pediatric guidelines campaign will go towards this project.

The committee members:

Katja Kovacic, M.D., Associate Professor Pediatrics-GI, Medical College Wisconsin – Chair; Heidi Gamboa, D.O., Assistant Professor – Pediatrics GI -Nicklaus Children’s Hospital – Miami; Amy Gelfand, M.D., Associate Professor – Pediatric Neurology, University of California San Francisco & Weill Institute for Neurosciences; Robert Issenman, M.D., Professor Pediatrics, McMaster University; B U.K. Li, M.D., Professor of Pediatrics, Medical College of Wisconsin; Sumit Parikh, M.D., Associate Professor Neurology/Metabolics, Case Western Reserve/Cleveland Clinic; John Rosen, M.D., Professor of Pediatrics-GI, University of Missouri, Kansas City School of Medicine; Sally Tarbell, Ph.D., Professor of Psychiatry and Behavioral Sciences, Northwestern University, Feinberg School of Medicine; Kathleen Adams, RN, BSN, President Emerita Cyclic Vomiting Syndrome Association, patient representative.

CVSA is happy to announce the plan to update the Pediatric Guidelines originally published in 2008 by NASPGHAN – North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition Consensus Statement on the Diagnosis and Management of Cyclic Vomiting Syndrome. The committee has been formed and is headed by Katja Kovacic,M.D., Assistant Professor of Pediatric Gastroenterology at the Medical College of Wisconsin. Dr. Kovacic is the Director of the Pediatric CVS Clinic at Children’s Wisconsin and a Primary Medical Advisor to CVSA.

The original document played a crucial role in doctors being able to diagnose, treat, and manage CVS. It was pediatric focused, but up until 2019 (when the adult treatment guidelines were published), the pediatric guidelines were also the basis for treating adult CVS patients. With the adult treatment guidelines now in place, CVSA with advice from the CVSA medical advisors, felt it is time to update the pediatric guidelines.

The committee is hopeful this project will not take as long as the first edition, but still plan on a 3-year process. As many of you know from the first 5-year long process and the recent 4-year process for the adult guidelines, not only is writing formal treatment guidelines time consuming it is quite costly. CVSA has been approached to be the financial sponsor of this project. CVSA, with help from donors like you, solely financed both the 2008 guidelines and the adult guidelines project published in June of 2019.

Therefore, we are asking for your help supporting this next step in bringing up to date treatment and diagnosis information to the medical professionals, patients and families around the world.

Estimated Costs for the pediatric guidelines include, but are not limited to:

$10,000 for publication and open access. Open access with ensure that anyone can have access to this document
$20,000 for 3 in-person meetings. Our committee members live all over the US and Canada. This will cover all travel, lodging, and food for the committee members. The in-person meetings are a crucial part of the guidelines process because this is where most of the “work” is done. They are rare opportunities for the whole committee to get together face-to-face to focus on the guidelines.

100% of your donation to the pediatric guidelines campaign will go towards this project.

The committee members:

Katja Kovacic, M.D., Assistant Professor Pediatrics-GI, Medical College Wisconsin – Chair; Heidi Gamboa, D.O., Pediatric Gastroenterologist-Nickalus Children’s Hospital; Amy Gelfand, M.D., Associate Professor, University of California-San Francisco Weill Institute for Neurosciences; Robert Issenman, M.D., Professor Pediatrics, McMaster University; April J. Kam, M.D., Associate Professor Department of Pediatrics, McMaster University; B U.K. Li, M.D.,Professor of Pediatrics, Medical College of Wisconsin; Sumit Parikh, M.D., John Rosen, M.D., Associate Professor of Pediatrics-GI, University of Missouri, Kansas City School of Medicine; Sally Tarbell, Ph.D, Professor of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine.

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