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While self-management support has been a component of adult chronic care for decades, it is just emerging as a critical need for children, especially those with complex conditions. Self-management is a shared undertaking between the child, their parents and care providers, and must take into account the child’s developmental status and the family’s capacities. Clinicians need routine, standardized approaches and tools to address the unique needs of children and their families including assessing self-management skills, collaboratively setting goals, and promoting competence and autonomy in youth. 

Discussing the article, Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions, the lead author and experts in the field reviewed the article’s key content and discussed how health systems could better support self-management by pediatric patients and their families.

This article is part of a supplement to Pediatrics entitled, “Building Systems that Work for Children with Complex Health Care Needs.” 

Webinar Recording


Amy Houtrow, MD, PhD, MPH

Chief, Division of Pediatric Rehabilitation Medicine and Vice Chair of Physical Medicine and Rehabilitation, Children’s Hospital of Pittsburgh and University of Pittsburgh Medical Center

Dr. Amy Houtrow is Associate Professor and Vice Chair in the Department of Physical Medicine and Rehabilitation for Pediatric Rehabilitation Medicine at the University of Pittsburgh School of Medicine. She is also the Vice Chair for Quality and Outcomes. She directs the ACGME accredited Pediatric Rehabilitation Medicine Fellowship and is the Chief of Pediatric Rehabilitation Medicine Services at Children’s Hospital of Pittsburgh and the Medical Director of the Rehabilitation Institute.

Melissa Novotny, DNP

Nurse Practitioner, Pediatric Complex Care Program and Pediatric Cerebral Palsy Clinic, American Family Children’s Hospital

Melissa Novotny is a Pediatric Nurse Practitioner who specializes in the care of medically complex children and adolescents within the Pediatric Complex Care Program at American Family Children’s Hospital in Madison, Wisconsin. She completed her Bachelor of Science in Nursing and Doctor of Nursing Practice degrees at the University of Wisconsin-Madison. She holds a national certification with the Pediatric Nursing Certification Board and is a member of the American Academy of Pediatrics and the National Association of Pediatric Nurse Practitioners.

Avani Modi, PhD

Professor of Pediatrics and Director, Center for Adherence and Self-Management, Cincinnati Children’s Hospital Medical Center

Dr. Avani Modi is Professor in Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati College of Medicine. She is the Director of the Center for Treatment Adherence and Self-Management, as well as the Co-Director of the New-Onset Seizure Clinic at Cincinnati Children’s Hospital Medical Center. She has also co-developed the Pediatric Self-Management Model, which is a well-cited model of adherence and self-management in the literature.

Rishi K. Agrawal, MD, MPH

Associate Professor of Pediatrics, Northwestern University Feinberg School of Medicine and Pediatric Specialist, Lurie and La Rabida Children’s Hospital in Chicago

Dr. Rishi K. Agrawal is an Associate Professor of Pediatrics at Northwestern University Feinberg School of Medicine and is a pediatric hospitalist at Lurie and La Rabida Children's Hospital in Chicago.  He is co-chair of the Academic Pediatric Association Complex Care Special Interest Group and has a research and advocacy interest in Children with Medical Complexity.  

Related Grants

This policy brief by the National Alliance to Advance Adolescent Health looks at what happens when low-income youth and young adults with chronic conditions and disabilities age out of the Title V Program for Children and Youth with Special Health Care Needs and provides policy recommendations.

This fact sheet from the National Health Law Program is designed to inform families about the steps they can take to appeal decisions about their child’s CCS benefits and highlight key resources available to support the process.