In this Complex Care Journal Club podcast episode, Dr. Eyal Cohen discusses the design and key findings of a randomized controlled trial evaluating the effectiveness of a structured complex care program in Ontario, Canada. He describes implications for clinical practice, opportunities for family partnership in research, and the next steps from this work.

SPEAKERS
Eyal Cohen, MD, MSc, FRCPC
Program Head, Child Health Evaluative Sciences
Staff Physician, Division of Pediatric Medicine
The Hospital for Sick Children (SickKids), 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

DATES
Initial publication: April 26, 2023

CITATION
Cohen E, Huth K. Measuring What Matters in a Multicenter RCT: Partnering With Patients/Families and Policymakers. 04/2023. OPENPediatrics. Online Podcast. Links: https://youtu.be/tTimlHM9Oj8, https://soundcloud.com/openpediatrics/measuring-what-matters-in-a-multicenter-rct-partnering-with-patientsfamilies-and-policymakers.

ARTICLE REFERENCED
Cohen E, Quartarone S, Orkin J, et al. Effectiveness of Structured Care Coordination for Children With Medical Complexity: The Complex Care for Kids Ontario (CCKO) Randomized Clinical Trial [published online ahead of print, 2023 Mar 20]. JAMA Pediatr. 2023;e230115. doi:10.1001/jamapediatrics.2023.0115 https://pubmed.ncbi.nlm.nih.gov/36939728/

TRANSCRIPT
https://bit.ly/41Xvaf0

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

Measuring What Matters in a Multicenter RCT: Partnering With Patients/Families and Policymakers

In this Complex Care Journal Club podcast episode, Dr. Nancy Murphy discusses the piloting of a home monitoring application for families of children with medical complexity and the associations between the level of parental concern and clinical status changes identified in secondary data analysis. She describes the key role families played in guiding the study, implications for clinical practice, and next steps from this work.

SPEAKERS
Nancy Murphy, MD
Professor of Pediatrics and Chief, Division of Pediatric Complex Care
Department of Pediatrics, University of Utah School of Medicine

HOST
Emily Goodwin, MD
General Academic Pediatrics/Beacon Program
Children’s Mercy Kansas City Broadway 
Associate Director of Medical Student Education
Clinical Assistant Professor of Pediatrics
University of Missouri Kansas City School of Medicine
Clinical Assistant Professor of Pediatrics
Kansas University Medical Center

DATES
Initial publication: June 28, 2023.

CITATION
Murphy N, Goodwin E. Trust Their Gut: Family Level of Concern and Clinical Changes in Children with Medical Complexity. 06/2023. OPENPediatrics. Online Podcast. Links: https://youtu.be/4RJAzlOnDo0, https://soundcloud.com/openpediatrics/trust-their-gut-family-level-of-concern-and-clinical-changes-in-children-with-medical-complexity. 

ARTICLES REFERENCED
Nkoy F, Stone B, Sheng X, Murphy N. High Parental Concern in Children With Medical Complexity: An Early Indicator of Illness. Hosp Pediatr. 2023;13(3):250-257. doi:10.1542/hpeds.2022-006876

TRANSCRIPT
https://op-docebo-images.s3.amazonaws.com/Transcripts/Trust+Their+Gut+-+Family+Level+of+Concern+and+Clinical+Changes+in+Children+with+Medical+Complexity_Murphy_062023.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: 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

Trust Their Gut: Family Level of Concern and Clinical Changes in Children with Medical Complexity

In this Complex Care Journal Club podcast episode, Dr. Michelle Watkinson discusses a systematic review of studies that evaluate community-based interventions for family caregivers of children with medical complexity (CMC). She describes important gaps in the literature about effective strategies to improve health for CMC in the home and community, implications for practice, and the next steps from this work.

SPEAKERS
Michelle Watkinson, MD, MPH
Assistant Professor of Pediatrics, University of Pittsburgh School of Medicine
Pediatrician, Division of Palliative Medicine and Supportive Care and Division of General Academic Pediatrics, UPMC Children’s Hospital of Pittsburgh

HOST
Kathleen Huth, MD, MMSc
Assistant Professor of Pediatrics, Harvard Medical School
Pediatrician, Complex Care Service, Department of Pediatrics, Boston Children's Hospital

DATES
Initial publication: August 7, 2023

CITATION
Watkinson MD, Huth K. Improving Health of Children with Medical Complexity in the Community: Literature and its Limits. 08/2023. OPENPediatrics. Online Podcast. Links: https://youtu.be/N8tSUjCFR80, https://on.soundcloud.com/Ry19W.

JOURNAL CLUB ARTICLE
Watkinson MD, Ehlenbach M, Chung PJ, et al. Interventions in the Home and Community for Medically Complex Children: A Systematic Review. Pediatrics. 2023;151(5):e2022058352. doi:10.1542/peds.2022-058352

OTHER ARTICLES REFERENCED
Barnert ES, Coller RJ, Nelson BB, Thompson LR, Klitzner TS, Szilagyi M, Breck AM, Chung PJ. A
Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health. Pediatrics.
2018 Sep;142(3):e20180779. doi: 10.1542/peds.2018-0779. Epub 2018 Aug 17. PMID: 30120101.

TRANSCRIPT
https://op-docebo-images.s3.amazonaws.com/Transcripts/Improving+Health+of+Children+with+Medical+Complexity_Watkinson_080723.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
 
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

Improving Health of Children with Medical Complexity in the Community: Literature and its Limits

In this Complex Care Journal Club podcast episode, Dr. Catherine Diskin and Ms. Kate Robinson discuss their team's approach to co-developing a continuing education seminar series. They describe the value of family partnership in complex care education and research, important considerations for effectively engaging families, and next steps from this work.

SPEAKERS
Catherine Diskin, MB, BCh, BAO
Assistant Professor of Pediatrics, University of Toronto
Co-Educational Lead, Complex Care Program, Department of Paediatrics, The Hospital for Sick Children

Kate Robinson, MFA
Founder and Artistic Director, Foxservingpie.org
Mother of a child with medical complexity

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

DATES
Initial Publication: November 6, 2023.

CITATION
Diskin C, Robinson K, Goodwin EJ. Partnering in Pedagogy: Reflections of a Family Leader and Clinician-Educator. 11/2023. OPENPediatrics. Online Podcast. Links: https://youtu.be/o7qTC7WsAKg, https://soundcloud.com/openpediatrics/partnering-in-pedagogy-reflections-of-a-family-leader-and-clinician-educator.

JOURNAL ARTICLE REFERENCED
Diskin C, Robinson K, Agrawal R, Masterson D, Coleman C, Cohen E. Family Partnership in Continuing Medical Education: A Collaborative Experience. Pediatrics. 2023;151(5):e2022060280. doi:10.1542/peds.2022-060280

ADDITIONAL ARTICLES CITED
Diskin C, Malik K, Gill PJ, Rashid N, Chan CY, Nelson KE, Thomson J, Berry J, Agrawal R, Orkin J, Cohen E. Research priorities for children with neurological impairment and medical complexity in high-income countries. Dev Med Child Neurol. 2022 Feb;64(2):200-208. doi: 10.1111/dmcn.15037. Epub 2021 Aug 30. PMID: 34462917; PMCID: PMC9291325.

TRANSCRIPT
https://op-docebo-images.s3.amazonaws.com/Transcripts/Partnering+in+Pedagogy+Reflections+of+a+Family+Leader+and+Clinician-Educator.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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

Partnering in Pedagogy: Reflections of a Family Leader and Clinician-Educator by Diskin and Robinson

In this Complex Care Journal Club podcast episode, Dr. Lewis First and Ms. Cara Coleman discuss the role of the journal Pediatrics in disseminating emerging evidence in complex care and disability. They describe the unique Family Partnerships column, the inclusive decision-making process for publication, and opportunities for clinicians and families to engage with the journal.

SPEAKERS
Lewis R. First, MD, MS
Editor-In-Chief, Pediatrics
Professor and Chair, Department of Pediatrics,
The University of Vermont Robert Larner, M.D. College of Medicine

Cara L. Coleman, JD, MPH
Associate Editor, Pediatrics
Instructor of Medical Education,
UVA Medicine Inova campus

HOST
Kathleen Huth, MD, MMSc
Pediatrician, Complex Care Service, Division of General Pediatrics
Boston Children's Hospital
Assistant Professor of Pediatrics
Harvard Medical School

DATES
Initial publication: December 4, 2023.

ARTICLES REFERENCED
https://publications.aap.org/pediatrics/pages/author-instructions#family_partnerships

https://publications.aap.org/pediatrics/resources/26567/commentary-from-the-council-on-children-with

Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011 Mar;127(3):529-38. doi: 10.1542/peds.2010-0910. Epub 2011 Feb 21. PMID: 21339266; PMCID: PMC3387912.

Agrawal R, Stille C, Editors.
Building Systems That Work for Children With Complex Health Care Needs
March 2018, Vol 141, Supplement 3
https://publications.aap.org/pediatrics/issue/141/Supplement_3

Brown TW, McLellan SE, Mann MY, Scott JA. Guest Editors
Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs
June 2022, Vol 149, Supplement 7
https://publications.aap.org/pediatrics/issue/149/Supplement%207

TRANSCRIPT
https://op-docebo-images.s3.amazonaws.com/Transcripts/+Collective+Voice_A+Conversation+about+Complex+Care_120523+.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: 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.

CITATION
First LR, Coleman CL, Huth K. Collective Voice: A Conversation about Complex Care and Disability in the Journal Pediatrics. 12/2023. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/collective-voice-a-conversation-about-complex-care-and-disability-in-the-journal-pediatrics

Collective Voice: A Conversation About Complex Care And Disability In The Journal Pediatrics

In this Complex Care Journal Club podcast episode, Dr. Julie Hauer and Ms. Jennifer Siedman discuss the development of an anticipatory guidance tool for children with severe neurologic impairment called NeuroJourney, an initiative of the Courageous Parents Network. They describe its grounding in palliative care principles and literature, opportunities to support collaborative relationships between clinicians and families, and next steps from this work.

SPEAKERS
Julie Hauer, MD
Pediatrician, Division of General Pediatrics
Boston Children's Hospital
Medical Director
Seven Hills Pediatrics Center

Jennifer Siedman, MEd
Director of Community Engagement﻿
Courageous Parents Network

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

DATES
Initial publication: February 5, 2024.

JOURNAL ARTICLE
Hauer J, Siedman J, Trager C, Thienprayoon R. NeuroJourney. Courageous Parents Network. Accessed Jan 25th, 2024. https://neurojourney.courageousparentsnetwork.org/

OTHER REFERENCES
Thienprayoon, R; Lord, BT; Siedman, J; Hauer, J. Creating a “Journey Map” for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. Journal of Pain and Symptom Management. 2023; 65:e270-e271.

Orkin J, Beaune L, Moore C, Weiser N, Arje D, Rapoport A, Netten K, Adams S, Cohen E, Amin R. Toward an Understanding of Advance Care Planning in Children With Medical Complexity. Pediatrics. 2020 Mar;145(3):e20192241. doi: 10.1542/peds.2019-2241.

TRANSCRIPT
https://op-docebo-images.s3.amazonaws.com/Transcripts/Shared+Journeys_+Evidence-Based+Anticipatory+Guidance_020524.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
Hauer J, Siedman J, Goodwin EJ. Shared Journeys: Evidence-Based Anticipatory Guidance for Children with Severe Neurologic Impairment. 2/2024. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/shared-journeys-evidence-based-anticipatory-guidance-for-children-with-severe-neurologic-impairment

Shared Journeys: Evidence-Based Anticipatory Guidance for Children with Severe Neurologic Impairment

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

Choice and Voice: Family Perspectives on Decision-making for Children with Medical Complexity

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, Stuzbach 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.

New tracks tagged #complex care journal club podcast