OPENPediatrics

In this special Complex Care Journal Club podcast episode, co-hosts Drs. Kilby Mann and Kristie Malik interview presenters of posters and oral abstracts relevant to the care of children with medical complexity at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 78th Annual Meeting in Quebec City, Canada that took place October 23rd-26th 2024. Speakers describe the implications of their study findings, messages for patients and families, and priority areas for research that they hope can be investigated further by the complex care community in the coming years. SPEAKERS Tori Bahr, MD MedPeds Complex Care Physician Section Chief of Pediatrics Gillette Children's, St. Paul, Minnesota Laura Brunton, PT, PhD Associate Professor School of Physical Therapy Western University, London, Ontario Caitlin Cassidy, MD Associate Professor Departments of Physical Medicine & Rehabilitation and Pediatrics Western University, London, Ontario Adam Rosenbloom, MD, MPH Complex Care Pediatrician Dell Children's Medical Center University of Texas at Austin, Dell Medical School Cristina Sarmiento, MD Assistant Professor Department of Physical Medicine and Rehabilitation University of Colorado Anschutz Medical Campus, Aurora, Colorado Julie Stutzbach, PT, DPT, PhD Assistant Professor School of Rehabilitative and Health Sciences Regis University, Denver, Colorado HOSTS Kristina Malik, MD Assistant Professor of Pediatrics, University of Colorado School of Medicine Medical Director, KidStreet Pediatrician, Special Care Clinic, Children's Hospital Colorado Kilby Mann, MD Assistant Professor Pediatric Rehabilitation Medicine Children's Hospital Colorado DATE Initial publication date: November 11, 2024. ARTICLES AND ADDITIONAL REFERENCES • American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), https://www.aacpdm.org/ • AACPDM Complex Care Committee (https://www.aacpdm.org/about-us/committees/complex-care) • Houtrow AJ, Hurwitz MB. A dearth of disability-related competencies in Accreditation Council for Graduate Medical Education's Milestones 2.0. PM R. 2024 Aug 23. doi: 10.1002/pmrj.13257. Epub ahead of print. PMID: 39177053. • Fehlings D, Agnew B, Gimeno H, Harvey A, Himmelmann K, Lin JP, Mink JW, Monbaliu E, Rice J, Bohn E, Falck-Ytter Y. Pharmacological and neurosurgical management of cerebral palsy and dystonia: Clinical practice guideline update. Dev Med Child Neurol. 2024 Sep;66(9):1133-1147. doi: 10.1111/dmcn.15921. Epub 2024 Apr 19. PMID: 38640091. • AACPDM Care Pathway Dystonia in Cerebral Palsy, https://www.aacpdm.org/publications/care-pathways/dystonia-in-cerebral-palsy TRANSCRIPT https://cdn.bfldr.com/D6LGWP8S/as/p9pj6g7sxn5kjmmgps5wnk4/111124_-_Complex_Care_at_the_American_Academy_for_Cerebral_Palsy_and_Developmental_Medicine_Annual_Meeting Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: forms.gle/Bdxb86Sw5qq1uFhW6 CITATION Malik K, Bahr T, Brunton L, Cassidy C, Rosenbloom A, Sarmiento C, Stutzbach J, Mann K. Complex Care at the American Academy for Cerebral Palsy and Developmental Medicine Annual Meeting. 11/2024. OPENPediatrics. Online Podcast.. https://soundcloud.com/openpediatrics/complex-care-at-the-aacpdm-2024.

In this World Shared Practice Forum podcast, we discuss the Pediatric Sepsis Data CoLaboratory (Sepsis CoLab), an international open data-sharing network to address pediatric sepsis mortality and morbidity. Drs. Kissoon, Ansermino, and Akech discuss the challenges related to the collection and sharing of data in a global context, the latest advancements in sepsis research and treatment, and how they believe this work will drive better patient outcomes. LEARNING OBJECTIVES - Recognize the role of the Sepsis CoLab in global sepsis care - Describe the challenges and strategies for data sharing in healthcare - Summarize the importance of standardized data collection in sepsis research - Discuss some specific examples of how data can be used to support initiatives to improve the care of children with sepsis AUTHORS Niranjan "Tex" Kissoon, MBBS, FRCP(C), MCCM, FACPE Professor, Department of Pediatrics, University of British Columbia, Investigator, BCCH Research Institute President, Global Sepsis Alliance Institute for Global Health BC Children's Hospital and BC Women's Hospital & Health Centre Mark Ansermino, MBBCh Professor University of British Columbia Executive Medical Director for Global Health BC Children's Hospital Samuel Akech, MD, Consultant Pediatrician & Epidemiologist KEMRI-Wellcome Trust DATE Initial publication date: October 21, 2024. ADDITIONAL RESOURCES Sepsis CoLab: https://wfpiccs.org/pediatric-sepsis-colab/ Pediatric Sepsis CoLab Membership Application: https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79 Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user.For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Kissoon NT, Ansermino JM, Akech S, Wolkbrink TA. Improving Sepsis Care: A Data-Driven Approach. 10/2024. OPENPediatrics. https://soundcloud.com/openpediatrics/improving-sepsis-care-a-data-driven-approach-openpediatrics.

In this Complex Care Journal Club podcast episode, Dr. Renee Turchi discusses an intervention study to improve emergency preparedness for families with children and youth with special health care needs. She describes the multiple community partners involved in intervention development, key insights gained while conducting the study, and next steps from this work. SPEAKER Renee M. Turchi, MD, MPH, FAAP Professor and Chair of Pediatrics, Pediatrician in Chief St. Christopher's Hospital for Children HOST Emily Goodwin, MD Clinical Associate Professor of Pediatrics, University of Missouri Kansas City School of Medicine Pediatrician, General Academic Pediatrics Beacon Program, Children’s Mercy Kansas City DATE Initial publication date: October 7, 2024. JOURNAL ARTICLE Griffin JS, Hipper TJ, Chernak E, Berhane Z, Davis RK, Popek L, Kurapati P, Kim J, Turchi RM. A Virtual Home Preparedness Intervention Centered on Children and Youth With Special Health Care Needs. Acad Pediatr. 2024 Jun 10:S1876-2859(24)00167-0. doi: 10.1016/j.acap.2024.06.002. Epub ahead of print. PMID: 38866363. https://www.academicpedsjnl.net/article/S1876-2859(24)00167-0/fulltext OTHER REFERENCES Hipper TJ, Davis R, Massey PM, Turchi RM, Lubell KM, Pechta LE, Rose DA, Wolkin A, Briseño L, Franks JL, Chernak E. The Disaster Information Needs of Families of Children with Special Healthcare Needs: A Scoping Review. Health Secur. 2018 May/Jun;16(3):178-192. doi: 10.1089/hs.2018.0007. Epub 2018 Jun 8. PMID: 29883200; PMCID: PMC11015856. https://pubmed.ncbi.nlm.nih.gov/29883200/ TRANSCRIPT https://op-docebo-images.s3.amazonaws.com/Transcripts/Preparing+for+Emergencies+Planning+and+Partnerships+with+Families_Turchi_100824.pdf Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user.For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Turchi RM, Goodwin EJ. Preparing for Emergencies: Planning and Partnerships with Families. 10/2024. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/preparing-for-emergencies-planning-and-partnerships-with-families.

Dr. Aaron Bodansky, an Assistant Professor of Pediatric Critical Care at UCSF, and Dr. Adrienne Randolph from Boston Children’s Hospital discuss cutting-edge research on Multisystem Inflammatory Syndrome in Children (MIS-C). They unpack the immune responses linked to MIS-C, highlighting how molecular mimicry may trigger autoimmune diseases. The conversation also delves into the role of SARS-CoV-2 in this condition and examines the immune dysregulation seen in affected children, with implications for understanding long COVID and other related disorders.

In this Complex Care Journal Club podcast episode, Ms. de Pins and Dr. Lin discuss a quality improvement initiative to standardize post-visit written communication in a multidisciplinary clinic. They describe stakeholder involvement in defining project goals, effective interventions to reduce the use of medical jargon in after-visit summaries, and next steps from this work. SPEAKERS Agathe de Pins, BSc, MSc Medical Student Icahn School of Medicine at Mount Sinai Elaine Lin, MD Co-Director, Cerebral Palsy and Spasticity Center Pediatrician, Complex Care Service, Boston Children's Hospital HOST Kristina Malik, MD Assistant Professor of Pediatrics, University of Colorado School of Medicine Medical Director, KidStreet Pediatrician, Special Care Clinic, Children's Hospital Colorado DATE Initial publication: September 9, 2024. JOURNAL ARTICLE de Pins AM, Adu-Amankwah D, Shadman KA, Hess SM, Elaiho CR, Butler LR, Ranade SC, Shah BJ, Fields R, Lin EP. A Quality Improvement Project to Improve After-visit Summary Patient Instructions in a Pediatric Multidisciplinary Neuromuscular Program. Pediatr Qual Saf. 2024 Jul 10;9(4):e743. doi: 10.1097/pq9.0000000000000743. PMID: 38993270; PMCID: PMC11236396. OTHER REFERENCES Gidengil C, Parast L, Burkhart Q, Brown J, Elliott MN, Lion KC, McGlynn EA, Schneider EC, Mangione-Smith R. Development and Implementation of the Family Experiences With Coordination of Care Survey Quality Measures. Acad Pediatr. 2017 Nov-Dec;17(8):863-870. doi: 10.1016/j.acap.2017.03.012. Epub 2017 Mar 31. PMID: 28373108. Hess SM, Adu-Amankwah D, Elaiho CR, Butler LR, Ranade SC, Shah BJ, Shadman K, Fields R, Lin EP. Qualitative feedback from caregivers in a multidisciplinary pediatric neuromuscular clinic. J Pediatr Rehabil Med. 2024;17(2):237-246. doi: 10.3233/PRM-230011. PMID: 38427510; PMCID: PMC11306999. TRANSCRIPT https://op-docebo-images.s3.amazonaws.com/Transcripts/Drop+the+Jargon_Lin+and+de+Pins_090924.pdf Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: forms.gle/Bdxb86Sw5qq1uFhW6 Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user.For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION de Pins AM, Lin EP, Malik K. Drop the Jargon: Improving Written Communication to Families After Multidisciplinary Care. 9/2024. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/drop-the-jargon-improving-written-communication-to-families-after-multidisciplinary-care

Join Annette Schure, a Senior Associate in Cardiac Anesthesia at Boston Children's Hospital and Assistant Professor at Harvard Medical School, as she delves into the complexities of anesthesia for patients with unrepaired tetralogy of Fallot. She discusses essential preoperative evaluations and strategies to ensure safety during non-cardiac surgeries. The conversation also highlights the unique challenges of laparoscopic procedures, emphasizing the importance of careful postoperative care and multimodal analgesia to minimize risks.

In this World Shared Practice Forum Podcast, experts from three large pediatric hospitals discuss their collaborative care models designed to optimize care for patients undergoing hematopoietic stem cell transplant. This global panel reviews the history, structure, and current state of these models, and offers insight into how clinicians can develop and improve their own collaborative care models. LEARNING OBJECTIVES - Identify the importance of collaborative care models for hematopoietic stem cell transplant patients - Discuss the status of current care models in three pediatric stem cell transplant programs - Apply insights on how clinicians develop collaborative care models and steps that can be taken to make ongoing improvements AUTHORS Asya Agulnik, MD, MPH Associate Member, St. Jude Faculty Director, Global Critical Care Program Director, Euro Regional Program St. Jude Children’s Research Hospital Indira Jayakumar, MD Lead Pediatric Intensivist Apollo Specialty Cancer Hospitals Co Convenor- IAP Transplant Critical Care, Chairman- Pediatric wing, ECMO Society of India Chennai, Tamil Nadu, India Leslie Lehmann, MD Attending Physician, Pediatric Stem Cell Transplant Center Boston Children's Hospital/Dana Farber Cancer Institute Associate Professor of Pediatrics Harvard Medical School Revathi Raj, MBBS, DCH, PLAB, MRCP, FRCPath Senior Consultant Department of Pediatric Hematology and Oncology and Blood and Marrow Transplantation Apollo Hospitals Chennai, Tamil Nadu, India Adrienne Randolph, MD, MSc Senior Associate in Critical Care Medicine, Department of Anesthesiology, Critical Care and Pain Medicine Boston Children's Hospital Professor of Anaesthesia and Pediatrics Harvard Medical School Aimee C. Talleur, MD Assistant Member, Department of Bone Marrow Transplantation and Cellular Therapy Fellowship Director, BMTCT Fellowship Program St. Jude Children's Research Hospital DATES Initial publication: August 26, 2024. ARTICLES REFERENCED • Zinter MS, McArthur J, Duncan C, et al. Candidacy for Extracorporeal Life Support in Children After Hematopoietic Cell Transplantation: A Position Paper From the Pediatric Acute Lung Injury and Sepsis Investigators Network’s Hematopoietic Cell Transplant and Cancer Immunotherapy Subgroup. Pediatr Crit Care Med. 2022;23(3):205-213. doi:10.1097/PCC.0000000000002865 (13:04) • St. Jude Global Critical Care program, https://global.stjude.org/en-us/programs/transversal-programs/critical-care.html, Email: globalcriticalcare@stjude.org (25:49) Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Agulnik A, Jayakumar I, Lehmann L, Raj R, Randolph AG, Talleur AC, Wolbrink TA. Collaborative Care Models to Optimize Care of Hematopoietic Stem Cell Transplant Patients. 08/2024. OPENPediatrics. Podcast https://soundcloud.com/openpediatrics/collaborative-care-models-to-optimize-care-of-hsct-patients-by-t-wolbrink-et-al-openpediatrics.

In this Complex Care Journal Club podcast episode, Dr. Kate Nelson discusses a qualitative study exploring decision-making skills developed by family caregivers of children with medical complexity. She describes the impact of contextual factors and relationships within care teams on decision-making, family partnership in research, and the next steps from this work. SPEAKER Kate Nelson, MD, PhD Staff Pediatrician, Paediatric Advanced Care Team The Hospital for Sick Children Scientist SickKids Research Institute Assistant Professor University of Toronto HOST Kathleen Huth, MD, MMSc Pediatrician, Complex Care Service, Division of General Pediatrics Boston Children's Hospital Assistant Professor of Pediatrics Harvard Medical School DATE Initial publication date: August 5, 2024. Journal Club Article Finlay M, Chakravarti V, Buchanan F, Dewan T, Adams S, Mahant S, Nicholas D, Widger K, McGuire KM, Nelson KE. Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity. J Pain Symptom Manage. 2024 May 28:S0885-3924(24)00792-9. doi: 10.1016/j.jpainsymman.2024.05.023. Epub ahead of print. PMID: 38810951. TRANSCRIPT https://op-docebo-images.s3.amazonaws.com/Transcripts/Choice+and+Voice+Family+Perspectives+on+Decision-making+for+Children+_nelson_080524.pdf Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: https://forms.gle/Bdxb86Sw5qq1uFhW6 Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user.For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Nelson K, Huth K. Choice and Voice: Family Perspectives on Decision-making for Children with Medical Complexity. 8/2024. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/choice-and-voice-family-perspectives-on-decision-making-for-children-with-medical-complexity

Explore the ins and outs of tonsillectomy, including vital anatomical insights and indications for surgery. Learn about anesthesia strategies tailored for pediatric patients, especially those with complex airways. Discover the two main techniques for tonsil removal, weighing their benefits and risks. Postoperative care takes center stage, highlighting how to manage complications like airway obstruction and bleeding. This informative chat equips listeners with essential knowledge for better patient outcomes.

In this Complex Care Journal Club podcast episode, Ms. Bethlyn Vergo Houlihan and Ms. Meg Comeau discuss a qualitative study of the perspectives of families of children with medical complexity on what is needed to promote their quality of life and well-being. They describe the family-led approach to designing and conducting the study, the importance of upholding human dignity as a major theme, and next steps to translate their findings into systems change. SPEAKERS Bethlyn Vergo Houlihan, MSW, MPH Project Director, Principal Investigator Center for Innovation in Social Work & Health Boston University School of Social Work Meg Comeau, MHA Senior Project Director/Principal Investigator Center for Innovation in Social Work and Health Boston University School of Social Work HOST Kristina Malik, MD Assistant Professor of Pediatrics, University of Colorado School of Medicine Medical Director, KidStreet Pediatrician, Special Care Clinic, Children's Hospital Colorado DATE Initial publication date: July 1, 2024. JOURNAL CLUB ARTICLES Houlihan BV, Coleman C, Kuo DZ, Plant B, Comeau M. What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change. Pediatrics. 2024 Jan 1;153(Suppl 1):e2023063424F. doi: 10.1542/peds.2023-063424F. PMID: 38165241. Randolph G, Coleman C, Allshouse C, Plant B, Kuo DZ. Measuring What Matters to Children With Medical Complexity and Their Families. Pediatrics. 2024 Jan 1;153(Suppl 1):e2023063424C. doi: 10.1542/peds.2023-063424C. PMID: 38165239. TRANSCRIPT chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://op-docebo-images.s3.amazonaws.com/Transcripts/Upholding+Human+Dignity+for+Children+with+Medical+Complexity+and+their+Families_070124.pdf Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: https://forms.gle/Bdxb86Sw5qq1uFhW6 Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user.For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Houlihan BV, Comeau M, Malik K. Upholding Human Dignity for Children with Medical Complexity and their Families. 7/2024. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/upholding-human-dignity-for-children-with-medical-complexity-and-their-families