In this Complex Care Journal Club podcast episode, Ms. Pearce and Dr. Synnes discuss a series of patient-oriented research studies aimed at partnering with parents in reimagining meaningful outcomes for premature infants. They describe the inclusion of parents on the study team, recruitment of parent participants, lessons and challenges while conducting the study, messages for other researchers and parents, and the next steps from this work.

SPEAKERS
Rebecca Pearce, B. Ed, MSc
Vice Principal
Villa Maria High School
Parent Partner
CHU Sainte-Justine and Canadian Premature Babies Foundation‌

Anne Synnes, MDCM, MHSc
Clinical Professor, Neonatologist
University of British Columbia
British Columbia's Women's Hospital and British Columbia's Children's Hospital Research Institute

HOST
Kilby Mann, MD
Assistant Professor
Pediatric Rehabilitation Medicine
Children's Hospital Colorado

DATE
Initial publication date: February 10, 2025.

ARTICLES REFERENCED
Pearce R, Synnes A, Lam MM, Richter LL, Bacchini F, Jones M, Luu TM, Janvier A; PARENTS’ VOICE NETWORK. Partnering With Parents to Change Measurement and Reporting of Preterm Birth Outcomes. Pediatrics. 2024 Nov 1;154(5):e2024067093. doi: 10.1542/peds.2024-067093. PMID: 39354888.

Haslam MD, Lisonkova S, Creighton D, Church P, Yang J, Shah PS, Joseph KS, Synnes A; Canadian Neonatal Network and the Canadian Neonatal Follow-Up Network. Severe Neurodevelopmental Impairment in Neonates Born Preterm: Impact of Varying Definitions in a Canadian Cohort. J Pediatr. 2018 Jun;197:75-81.e4. doi: 10.1016/j.jpeds.2017.12.020. Epub 2018 Feb 3. PMID: 29398054.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/p65m4p98gppf65mz3zhmm9g/February_Pearce_and_Synnes_ccjcp_final_revisions‌

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

CITATION
Pearce R, Synnes A, Mann K. Focus on Abilities: Parent-Identified Outcomes of Preterm Infants. 2/2025. OPENPediatrics. Online Podcast: https://soundcloud.com/openpediatrics/focus-on-abilities-parent-identified-outcomes-of-preterm-infants

Focus on Abilities: Parent-Identified Outcomes of Preterm Infants‌

In this Complex Care Journal Club podcast episode, Dr. Cristina Sarmiento discusses a qualitative study exploring experiences of young adults with cerebral palsy and their caregivers with transition to adult care. She describes the major barriers and facilitators to transition, challenges and opportunities related to conducting the study, implications for practice, and next steps from this work.

SPEAKER
Cristina Sarmiento, MD
Assistant Professor
University of Colorado Anschutz Medical Campus

HOST
Emily J. 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: March 10, 2025.

ARTICLE REFERENCED
Sarmiento CA, Wyrwa JM, Glaros C, Holliman BD, Brenner LA. Experiences of young adults with cerebral palsy in pediatric care transitioning to adult care. Dev Med Child Neurol. 2025 Jan;67(1):99-110. doi: 10.1111/dmcn.15907. Epub 2024 Mar 24. PMID: 38523396.‌

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/63kfcjrfv57nh4t8qbrhrvj/March_CCJCP_Sarmiento_transcript_Final_3-5‌

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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Sarmiento, C, Goodwin EJ.  Let’s Talk about Transition: Experiences of Young Adults with Cerebral Palsy and their Caregivers. 3/2025. OPENPediatrics. Online Podcast.



Let’s Talk about Transition: Experiences of Young Adults with Cerebral Palsy and Their Caregivers‌

In this Complex Care Journal Club podcast episode, Drs. Chelsea Bodnar and James Bohnhoff discuss a cross-sectional study of children with medical complexity and their access to care in Montana. They describe challenges and inequities in access to care, implications for practice, and next steps from this work.

SPEAKERS
Chelsea Bodnar, MD, MPhil
Chief Executive Officer
Montana Pediatrics

James Bohnhoff, MD, MS
Assistant Professor and Pediatrician
MaineHealth

HOST
Kilby Mann, MD
Assistant Professor
Pediatric Rehabilitation Medicine
Children's Hospital Colorado

DATE
Initial publication date: April 7, 2025.

JOURNAL CLUB ARTICLE
Bohnhoff J, Bodnar C, Graham J, Knudson J, Fox E, Leary C, Cater L, Noonan C. Medicaid‑Insured Children with Medical Complexity in a Rural State. Acad Pediatr. 2024 Dec 24:102628. doi: 10.1016/j.acap.2024.102628. Epub ahead of print. PMID: 39725002.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/7j8pnk2vmjc9jb3kwbh2njk/Bodnar_and_Bohnhoff_transcript_4-1-25‌

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

CITATION
Bodnar C, Bohnhoff J, Mann K. Far From Care: Children with Medical Complexity in a Rural Setting. 4/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/far-from-care-children-with-medical-complexity-in-a-rural-setting

Far From Care: Children with Medical Complexity in a Rural Setting

In this special Complex Care Journal Club podcast episode, co-hosts Emily Goodwin, Kristie Malik, and Kathleen Huth interview presenters of posters and oral abstracts relevant to the care of children with medical complexity at the Pediatric Academic Societies (PAS) 2025 annual meeting. 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
Lucas Bruton, MD, MEd
Instructor of Pediatrics
Northwestern University

Hannah Lane, PhD, MPH
Assistant Professor
Duke  School of Medicine

Jennifer B. Peralta, MD, MSHPM, MS
Health Sciences Clinical Instructor
UCLA Department of Pediatrics
David Geffen School of Medicine

Amy Porter, MD, PhD
Physician-Investigator, Instructor
Mass General for Children
Massachusetts General Hospital
Harvard Medical School

Elaina Schueler, BA
Clinical Research Coordinator
Medical College of Wisconsin

Rebecca Steuart, MD, MS
Assistant Professor of Pediatrics
Medical College of Wisconsin
 
Aditi Vasan, MD, MSHP
Assistant Professor of Pediatrics
University of Pennsylvania and Children's Hospital of Philadelphia

Peter Walsh, BA
Behavioral Research Coordinator
Ann and Robert H. Lurie Children's Hospital of Chicago

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

Emily J 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

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: May 12, 2025.

REFERENCE
Pediatric Academic Societies. Who we are. Accessed April 29, 2025. https://www.pas-meeting.org/about/

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/at/ng43ccschnbg2vfnp9wq7v5h/CCJCP_May_Conference_5-9-25.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/Bdxb86Sw5qq1uFhW6n 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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Goodwin EJ, Malik K, Bruton L, Lane H, Peralta JB, Porter AS, Schueler E, Steuart R, Vasan A, Walsh P﻿, ﻿﻿﻿Huth K. Practice-Changing Research in Complex Care at the Pediatric Academic Societies 2025 Annual Meeting. 5/2025. OPENPediatrics. Online Podcast.

Practice-Changing Research in Complex Care at the Pediatric Academic Societies 2025 Annual Meeting

In this Complex Care Journal Club podcast episode, Drs. Tamara Simon and Patrick Brady discuss the role of the journal Hospital Pediatrics in disseminating emerging evidence in complex care. They describe the evolution of complex care research throughout the journal's history, alignment with the journal's mission, and opportunities for clinicians to contribute to the literature in partnership with families.

SPEAKERS
Tamara Simon, MD, MSPH, FAAP
Professor of Pediatrics (Clinical Scholar)
University of Southern California Keck School of Medicine and Children's Hospital Los Angeles
CHLA Site Principal Investigator and Director, Workforce Development, SC CTSI‌‌

Patrick Brady, MD, MSc
Professor, Division Director, 
Division of Hospital Medicine
Cincinnati Children's Hospital
University of Cincinnati College of Medicine

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: June 9, 2025.

ARTICLE REFERENCED
Simon TD; THE EDITORIAL BOARD OF HOSPITAL PEDIATRICS. Complex Care Has Arrived. Hosp Pediatr. 2020 Aug;10(8):631-632. doi: 10.1542/hpeds.2020-001057. Epub 2020 Jul 2. PMID: 32616601.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/q4sxvz3kvrpbvk7wqw7vms5z/Simon_and_Brady_Final_Transcript_6-4-25‌‌

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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Simon T, Brady P, Malik K. Elevating the Evidence: Complex Care Research in the Journal Hospital Pediatrics. 6/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/elevating-the-evidence-complex-care-research-in-the-journal-hospital-pediatrics.

Elevating the Evidence: Complex Care Research in the Journal Hospital Pediatrics

In this Complex Care Journal Club podcast episode, Dr. Miriam Shapiro, Ms. Kate Detwiler, and Dr. Vanessa Madrigal discuss a survey of families with children with chronic conditions about ethical challenges they have experienced in their child's care and sources of support. They describe the residual distress reported by families, implications for clinical practice, and next steps from this work.

SPEAKERS
Miriam Shapiro, MD
Associate Professor‌, Affiliate Faculty, and Pediatric Intensivist
University of Minnesota Medical School
University of Minnesota Center for Bioethics
Masonic Children's Hospital

Kathryn Detwiler, MBA
Parent Advocate, Parent Researcher
Program Manager, Complex Care
Children's National Hospital

Vanessa Madrigal, MD, MSCE, HEC-C
Associate Professor, Director Pediatric Ethics Program, and Pediatric Critical Care Medicine
The George Washington University
Children's National Hospital

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: July 7, 2025.

JOURNAL CLUB ARTICLE 
Shapiro MC, Detwiler K, Shepard J, Bernhard T, Li X, Boss RD, Madrigal VN. Ethical Challenges in Pediatric Medical Complexity: A Survey of Parents. J Pediatr. 2025 Apr;279:114478. doi: 10.1016/j.jpeds.2025.114478. Epub 2025 Jan 27. PMID: 39864504; PMCID: PMC12013584.

OTHER ARTICLES REFERENCED
Cho HL, Grady C, Tarzian A, Povar G, Mangal J, Danis M. Patient and Family Descriptions of Ethical Concerns. Am J Bioeth. 2020 Jun;20(6):52-64. doi: 10.1080/15265161.2020.1754500. PMID: 32441594; PMCID: PMC7673656.

Pang J, Batson L, Detwiler K, Miller ME, Thorndike D, Boss RD, Shapiro MC. Where do families turn? Ethical dilemmas in the care of chronically critically Ill children. Monash Bioeth Rev. 2024 Jul 8. doi: 10.1007/s40592-024-00201-6. Epub ahead of print. PMID: 38976209.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/p9cpbchs45rp3xq8p747pv83/July_CCJCP_Shapiro_Madrigal_Detwiler_Transcript_7-2-25‌

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

CITATION
Shapiro MC, Detwiler K, Madrigal VN, Huth K. Families Face Ethical Challenges More Often Than They Change a G Tube: Rethinking Our Care. 7/2025. OPENPediatrics. https://soundcloud.com/openpediatrics/families-face-ethical-challenges-more-often-than-they-change-a-g-tube-rethinking-our-care.

Families Face Ethical Challenges More Often Than They Change a G Tube: Rethinking Our Care

In this Complex Care Journal Club podcast episode, Dr. Robbie Dembo and Ms. Kate Honsberger discuss a mixed methods study of oral health experiences and disparities among children with special health care needs. They describe oral health problems faced by children with medical complexity, barriers to high-quality dental care reported by family caregivers, and strategies for disseminating findings from their study.

SPEAKERS
Robbie Dembo, PhD
Senior Research Scientist
Principal Investigator
National Opinion Research Center (NORC)
University of Chicago

Kate Honsberger, BA
Director, Health Care Programs 
National Opinion Research Center (NORC)
University of Chicago

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: August 11, 2025.

JOURNAL CLUB ARTICLE
NORC at the University of Chicago. Oral Health Among Children with Special Health Care Needs. Accessed August 4, 2025. https://www.norc.org/research/projects/oral-health-children-special-health-care-needs.html

OTHER ARTICLES REFERENCED
Child and Adolescent Health Measurement Initiative. Shared care planning for children with special health care needs.  Accessed August 4, 2025. https://www.cahmi.org/our-work-in-action/engagement-in-action/cshcn

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.

Yu JA, McKernan G, Hagerman T, Schenker Y, Houtrow A. Identifying children with medical complexity from the National Survey of Children’s Health combined 2016–17 data set. Hospital Pediatrics. 2021;11(2):192- 197. doi:10.1542/hpeds.2020-0180

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/9767nfr2rj79c2hft2cc3g8/Dembo_and_Hornsberget_final_8-7-25‌

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

CITATION
Dembo R, Honsberger K, Malik K. Brushing Up on High-Quality Oral Health Care for Children with Medical Complexity. 08/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/brushing-up-on-high-quality.

Brushing Up on High-Quality Oral Health Care for Children with Medical Complexity

In this Complex Care Journal Club podcast episode, Ms. Kathryn Knight and Dr. Brian K. Jordan discuss a national survey of families of children with medical complexity on access to home health nursing. They describe the impact of the nursing shortage on families, development of a nonprofit resource that facilitates connections between families and home nursing, and outline next steps from this work.

Learn more about Hello Nurze: www.hellonurze.com
Find additional details about the F.A.C.E.S. Project: www.hellonurze.com/p/faces-project

SPEAKERS
Kathryn Knight, BBA
Co-Founder & Executive Director, Hello Nurze

Brian K. Jordan, MD, PhD
Associate Professor
Oregon Health & Science University

HOST
Emily J. 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: September 8, 2025.

JOURNAL CLUB ARTICLE
Knight K, Knight G, Jordan BK. The Impact of the Lack of Access to Home Health Nursing on Families of Children with Medical Complexity in the United States. Home Healthc Now. 2025 Jul-Aug 01;43(4):213-220. doi: 10.1097/NHH.0000000000001356. Epub 2025 Jul 7. PMID: 40619624.

OTHER ARTICLES REFERENCED
Baker CD, Martin S, Thrasher J, Moore HM, Baker J, Abman SH, Gien J. A Standardized Discharge Process Decreases Length of Stay for Ventilator-Dependent Children. Pediatrics. 2016 Apr;137(4):e20150637. doi: 10.1542/peds.2015-0637. Epub 2016 Mar 10. PMID: 26966133; PMCID: PMC4811306.

Hello Nurze. Connecting families and in-home nurses. Accessed August 27, 2025. https://www.hellonurze.com

Moore PE, Boyer D, O'Connor MG, Baker CD, Rettig JS, Sterni L, Halbower A, Wilson KC, Thomson CC. Pediatric Chronic Home Invasive Ventilation. Ann Am Thorac Soc. 2016 Jul;13(7):1170-2. doi: 10.1513/AnnalsATS.201603-196CME. PMID: 27388405; PMCID: PMC5462000.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/87x9cmw5xfnkkt74v5g5pv3/Jordan_and_Knight_Final_Transcript__9-5-25‌

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

CITATION
Knight K, Jordan BK﻿﻿, Goodwin EJ. From Crisis to Connection: Matching Families with Home Nursing Support in Complex Care. 09/2025. ﻿OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/from-crisis-to-connection-matching-families-with-home-nursing-support-in-complex-care.

From Crisis to Connection: Matching Families with Home Nursing Support in Complex Care

In this special Complex Care Journal Club podcast episode, host Dr. Kilby Mann interviews 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) 79th Annual Meeting, October 15-18, 2025, in New Orleans, Louisiana. Speakers describe their study findings and implications for practice. Dr. Francisco Valencia also discusses the role of the Complex Care Committee and the profound impact of mentorship in the field of complex care.

SPEAKERS
Laura Brunton, PT, PhD,
Associate Professor, 
School of Physical Therapy, 
Western University, 
London, Ontario, Canada

Caitlin Cassidy, MD, 
Associate Professor, 
Department of Physical Medicine and the Department of Rehabilitation and Pediatrics, 
Western University, 
London, Ontario, Canada

Susan Gibb, MBBS, FRACP, 
Medical Lead, Complex Care Hub,
Royal Children’s Hospital, 
Melbourne, Australia

Francisco Valencia, MD,
Pediatric Orthopedic Surgeon,
Children's Clinics For Rehabilitative Services,
Tucson, Arizona

Simran Prakash, BA,
Medical Student, 
University of Miami Miller School of Medicine

Karen Pratt, BA, MSc,
PhD Candidate,
Western University School of Health Sciences,
London, Ontario, Canada

Claire Wallace, PhD,
Pediatric Psychologist, 
Ranken Jordan Pediatric Bridge Hospital, 
Maryland Heights, Missouri

Esther Yap, BPharm, MD, 
Physician,
Royal Children’s Hospital, 
Melbourne, Australia

HOST
Kilby Mann, MD,
Assistant Professor,
Pediatric Rehabilitation Medicine,
Children's Hospital Colorado

DATE
Initial publication date: November 11, 2025.

RESOURCES REFERENCED
- American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 29th Annual Meeting, October 15-18, 2025, New Orleans, LA. https://www.aacpdm.org/events/2025/program

- American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), www.aacpdm.org/

- AACPDM Complex Care Committee (www.aacpdm.org/about-us/committees/complex-care)

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/bgmft56r8ksk85qxbthvzs/CCJCP_AACPDM_Transcript_11-4-25‌

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

CITATION
Valencia F, Brunton L, Cassidy C, Gibb S, Prakash S, Pratt K, Wallace C, Yap E, Mann K. Practice-Changing Research in Complex Care at the AACPDM Annual Meeting 2025. 11/2025. ﻿OPENPediatrics. Online Podcast.‌ https://soundcloud.com/openpediatrics/practice-changing-research-in-complex-care-at-the-aacpdm-annual-meeting-2025.

Practice-Changing Research in Complex Care at the AACPDM Annual Meeting 2025

In this Complex Care Journal Club podcast episode, Dr. Jody Lin discusses a qualitative study of shared decision-making for neuromuscular scoliosis surgery in children with medical complexity. She describes a broad range of family values and preferences that may guide decision-making, implications for clinical practice, and next steps from this work.‌

SPEAKER
Jody Lin, MD, MS
Pediatric Hospitalist
Assistant Professor of Pediatrics
Division of Inpatient Medicine
University of Utah

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: December 8, 2025.

JOURNAL CLUB ARTICLE
Lin JL, Devereaux T, Simon TD, Kaphingst KA, Zhu A, Narayanan U, Berry ABL, Eppich KG, Stoddard G, Smith JT, Andras L, Heflin J, Keenan HT, Asch SM, Fagerlin A. Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity. J Pediatr. 2025 Jan;276:114366. doi: 10.1016/j.jpeds.2024.114366. Epub 2024 Oct 19. PMID: 39428089; PMCID: PMC11645212.

OTHER ARTICLES REFERENCED
Courageous Parents Network. Scoliosis and spine / spinal surgery: facts and decision-making. https://courageousparentsnetwork.org/guides/decision-making-around-spinal-fusion-surgery/. Accessed November 14, 2025.

Lin JL, Clark CL, Halpern-Felsher B, Bennett PN, Assis-Hassid S, Amir O, Nunez YC, Cleary NM, Gehrmann S, Grosz BJ, Sanders LM. Parent Perspectives in Shared Decision-Making for Children With Medical Complexity. Acad Pediatr. 2020 Nov-Dec;20(8):1101-1108. doi: 10.1016/j.acap.2020.06.008. Epub 2020 Jun 12. PMID: 32540424; PMCID: PMC7655593.

Lin JL, Cohen E, Sanders LM. Shared Decision Making among Children with Medical Complexity: Results from a Population-Based Survey. J Pediatr. 2018 Jan;192:216-222. doi: 10.1016/j.jpeds.2017.09.001. Epub 2017 Nov 6. PMID: 29102046; PMCID: PMC5732902.

Lin JL, Tawfik DS, Gupta R, Imrie M, Bendavid E, Owens DK. Health and Economic Outcomes of Posterior Spinal Fusion for Children With Neuromuscular Scoliosis. Hosp Pediatr. 2020 Mar;10(3):257-265. doi: 10.1542/hpeds.2019-0153. PMID: 32079619; PMCID: PMC7041549.‌

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/at/xcz7qm4n2b9rn636rrnq/Jody_Lin_Final_transcript_12-4-25.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

CITATION
Lin JL, Huth K. Exploring What Matters: What Families Value in Complex Surgical Decision-Making. 12/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/exploring-what-matters-what-families-value-in-complex-surgical-decision-making.

New tracks tagged #openpediatrics