Welcome

Thank you for participating in this important initiative to develop recommendations for symptom surveillance and screening after hemispheric surgery. We hope that this effort will help parents, caregivers, medical providers, and other aligned clinicians navigate medical and functional outcomes after surgery.

Our goal is to minimize surprises in chronic postoperative care, prepare clinicians and caregivers for what may happen, and importantly, provide scaffolding for caregivers to manage medical and functional outcomes through adulthood.

Action Items

As of 4/27/24

After reviewing the project timeline and relevant documents below, please complete this travel and logistics form (for best viewability, including item instructions, complete this form from your PC/laptop.

General Information and Background

People and Working Groups

Initiative Co-Leads:

Nancy McNamara   nbrasch@med.umich.edu

Taylor Abel abeltj@upmc.edu 

Research Coordinator: Emily Harford  e_furar@gmail.com

Patient Voice Lead: Monika Jones mjones@epilepsysurgeryalliance.org

Working Groups

As of 5/20/24

Vision

Domain Lead: Linda Lawrence:

Working Group Members: Marlene Behrmann, Michael Granovetter, Sian Handley, Corinna Bauer, Alex Bowers, Melinda Chang, Kanwal “Ken” Nischal

Auditory

Domain Lead: Frank Musiek, PhD

Working Group Members: Vivian Iliadou, Jennifer Shin, Parmenion Tsitsopoulos

Mobility and Orthopedic

Domain Leads: Raymund Woo and Andrew Gordon

Working Group Members: Robert Kay, Reid Chambers

Endocrine

Domain Lead: Phillip Zeitler

Working Group Members: Jill Simons

Hydrocephalus

Domain Lead: Aria Fallah

Working Group Members: Jason Hauptman,  Sean Lew, Sandi Lam, Christian Dorfer, Shelly Wang

Cognitive and Behavioral Outcomes (including speech and language)

Domain Lead: Lynn Paul

Working Group Members: Cynthia Salorio, Mary Lou Smith, Patricia Walshaw, Madison Berl, Samantha Kliman, Hanna Ammonds, 

Literacy and Academic Achievement

Domain Lead: Joanna Christodoulou:

Working Group Members: Amy Maguire

Ethics and Consent

Domain Lead: George Ibrahim

Care Coordination and Integration

Domain Lead: Nancy McNamara

Working Group Members:  (invitations pending) Elaine Wirrell, Ahsan Moosa Valappil, Ahmad Marashly, Jeffrey Bolton, Andrea Andrade

Literature

A systematic review of the literature has been completed and we have identified relevant articles for each working group.Use the links below to access the literature base:

Linked below and organized alphabetically by domain, each section contains relevant statements and questions for consideration during working group discussions. These questions are suggested starting points for each working group but can certainly be refined, modified, and expanded as each group sees fit.

In 2019, we received a Eugene Washington Engagement Award from the Patient Centered Outcomes Research Institute to identify knowledge gaps on functional outcomes after large resective/disconnective epilepsy surgery. Please familiarize yourself with the following:

Functional outcome meeting review

Post-meeting manuscript: Knowledge Gaps for functional outcomes after multi-lobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019

Relevant publications since 2019 meeting:

Functional outcomes of pediatric hemispherotomy: Impairment, activity, and medical service utilization

Memory outcomes following hemispherectomy in children 

Surgery for intractable epilepsy in pediatrics, a systematic review of outcomes other than seizure freedom

Predicting language outcomes after left hemispherotomy: a systematic literature review

Video – Medical and Functional Outcomes After Hemispheric Surgery

To support your involvement, we are pleased to reimburse your reasonable coach airfare and hotel accommodations (arriving July 31st and departing August 2nd.) Should you wish to personally cover the costs of airfare and hotel, we are happy to treat this generous contribution as an in-kind donation to our organization. In recognition of your support, we will provide you with a donation receipt for the expenses incurred.

Hotel:  Sheraton Boston, 39 Dalton Street • Boston, MA •

Project Timeline

As we progress with our initiative, we understand that this proposed timeline is tight and the nature of our work might require additional time to ensure thoroughness and accuracy.

There is flexibility in our schedule.

During the plenary session on August 1, 2024, we encourage you to discuss openly if you feel more time is needed for any aspect of the project.

March - Literature Review

Systematic review of literature pertaining to medical and functional outcomes after hemispheric surgery.

✅ Completed: see domain literature

April - Identify and Invite Working Groups

Domain leads identify and invite working groups to participate in this initiative.

✅ Completed – See “People and Working Groups” below

May/June - First Working Group Meetings

Working groups meet separately via Zoom, once, to discuss the goal of the initiative, present relevant pre-meeting data from domain literature, and share/discuss proposed statements and findings. E Furar and M. Jones will assist with meeting scheduling, data summaries, and presentation slides. Proposed statements completed, awaiting working group discussion: proposed statements and findings.

Auditory Working Group: 05/24/24/ Meeting Summary

Vision Working Group: 05/15/24    Slides; Meeting Video Recording; Transcript

Neuropsych Working Group: 5/31/24 Slides; Video Recording: Meeting Summary and Transcript

Hydrocephalus Working Group: 6/5/24     Slides: Video Recording; Meeting Summary and Transcript

June - Focused Discussions

Each group discusses their specific domain area, examine current knowledge, identify gaps, and propose surveillance strategies. Each group will consider quality of life, burden of care, access to care, care coordination, and transition to adulthood. E Furar and M. Jones will assist with all aspects of the foregoing, including meeting scheduling and presentation slides.

July - Develop Recommendations

Each working group drafts their recommendations for symptom surveillance in their focus area. E Furar and M. Jones will assist with all aspects of the foregoing, including meeting scheduling and drafting recommendations.

August 1 st - Plenary Session (Boston)

Groups present their preliminary recommendations in a plenary session for open discussion and refinement. In-person attendance is optional but strongly encouraged. Zoom meeting capability will be provided for those who cannot attend in person.

Will include patient/caregiver presentation (5 min) re how lack of information in this domain impacted their care, developmental trajectory, etc.

Revise the recommendations as needed based on feedback from the entire panel. Groups will decide whether to vote on recommendations at this meeting or afterwards. If no consensus at plenary meeting, we will implement a structured voting system for each recommendation to achieve consensus.

September through early 2025: Publication and Dissemination

  1. Compilation of Recommendations: Compile a comprehensive document of all consensus recommendations.
  2. Feedback and Finalization: Circulate the draft document among panel members for final feedback.
  3. Publication and Dissemination: Publish the final consensus document, develop comprehensive dissemination plan, and disseminate document to relevant stakeholders, including healthcare providers, patients, and families.

December 8, 2024

Working groups will present an update on the status of this initiative and proposed statements at a satellite meeting to the American Epilepsy Society congress in Los Angeles.

Mid-2025: Follow-up Actions

Implementation Strategies: Develop strategies for implementing the recommendations in clinical practice (e.g. checklist for clinicians/families, decision aids, infographics.)

Monitoring and Evaluation: Plan for ongoing monitoring and evaluation of the implementation of these recommendations.

Future Research Directions: Identify areas where further research is needed and propose potential studies.

Support for this research initiative is provided in part by