IPWSO Mental Health ECHO® Videos

Patrice Carroll, Director of PWS Services, Latham Centers, USA
“IPWSO Mental Health ECHO Summary September 26, 2023”

Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on September 26, 2023.

Find a full overview of the meeting here. 

Kate Woodcock, University of Birmingham, UK
“Can early intervention with children living with PWS strengthen the cognitive capacity to effectively deal with change?”

Presented at the IPWSO Mental Health ECHO on September 26, 2023.

The presentation included:

1. Cognitive flexibility and specifically task switching in Prader-Willi syndrome. Some of the situations that can be most difficult for people with Prader-Willi syndrome are when task switching is challenged. In these situations, emotional outbursts and problematic behaviours are common.
2. An approach that carefully balances structure in routines with flexibility for children may be a helpful early intervention strategy.
3. Development of a web-based tool to help strike this balance. A key element is that the tool uses gamification to allow children to feel in control of their routines, despite parents being able to programme flexibility into these.

Find a full overview of the meeting here. 

Anastasia Dimitropoulos, Case Western Reserve University, USA
“The Importance of Pretend Play in Early Intervention.”

Presented at the IPWSO Mental Health ECHO on September 26, 2023.

This presentation covered:

1. The importance of pretend play for early intervention.
2. Social cognitive challenges in PWS that can be addressed with play intervention.
3. Strategies to boost pretend play and use play as a platform for learning for children with PWS.

Find a full overview of the meeting here. 

Elizabeth Roof, Vanderbilt University, USA
“IPWSO Mental Health ECHO Summary July 25, 2023”

Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on July 25, 2023.

Find a full overview of the meeting here. 

Kasey Bedard, BCBA, University of Florida, USA
“Applied Behavior Analysis and Prader-Willi syndrome”

Presented at the IPWSO Mental Health ECHO on July 25, 2023.

The presentation included:

1. Brief introduction to Applied Behaviour Analysis as a science
2. A conceptual overview of how behaviour and the environment interact to change and maintain behaviours
3. An overview of behaviours of concern in PWS from a behaviour analytic perspective

Find a full overview of the meeting here. The PDF of this presentation is available here. 

Kasey has also shared two helpful handouts which were discussed during the Question and Answer session.
1. Emotional regulation
2. Steps for teaching a self-calming break

Norbert Hödebeck-Stuntebeck, PhD, PWS-InterNational, Germany
“The application of psychological models in the understanding of adaptive and maladaptive behaviours in people with Prader-Willi syndrome”

Presented at the IPWSO Mental Health ECHO on July 25, 2023.

The presentation included:

• The complexity of human behavior
• Systemic view
• Developmental age
• Behaviour analysis
• 5 elements of subjective percieved wellbeing

Find a full overview of the meeting here. The PDF of this presentation is available here. 

Patrice Carroll, Director of PWS Services, Latham Centers, USA
“IPWSO Mental Health ECHO Summary June 27, 2023”

Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on June 27, 2023.

Find a full overview of the meeting here. 

Tony Holland, President, IPWSO, University of Cambridge, UK
“Clinical Challenge: When Services Fail: The prevention of avoidable deaths”

Presented at the IPWSO Mental Health ECHO on June 27, 2023.

Tony Holland shared a Clinical Challenge to stimulate discussion on what happens when PWS mental health services fail.

Find a full overview of the meeting here. The PDF of this presentation is available here. 

Maximillian Deest, Psychiatrist, Outpatient Department for Mental Health in Rare Genetic Disorders, Hannover Medical School, Germany
“Mental Health services for adults with PWS”

Presented at the IPWSO Mental Health ECHO on June 27, 2023.

The presentation included:
1. Learnings from the Outpatient Department for Mental Health in Rare Genetic Disorders at Hannover Medical School, Germany.
2. The most important things you need to be aware of when treating people with PWS and mental health issues.
3. The ideal setup of services for mental health in PWS.

Find a full overview of the meeting here. The PDF of this presentation is available here. 

Louise Gallagher, Chief of the Child and Youth Mental Health Collaborative at the Hospital for SickKids in Toronto, Canada
“Co-designing mental health and social services for PWS in Ireland”

Presented at the IPWSO Mental Health ECHO on June 27, 2023.

The learning objectives for this presentation were:
1. Understand how to conduct a gaps analysis of service provision with stakeholders.
2. Understanding the behavioural, emotional and psychiatric needs of children and youth with PWS.
3. Learn about the development of an integrated approach to care delivery involving psychiatry.

Find a full overview of the meeting here. The PDF of this presentation is available here. 

Tony Holland, President, IPWSO, University of Cambridge, UK
“IPWSO Mental Health ECHO Summary May 30, 2023”

Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on May 30, 2023.

Find a full overview of the meeting here. 

Christian Eberlein, Adult Psychiatrist and Head of the special outpatient clinic for mental health in rare syndromes, Hannover Medical School, Hannover, Germany
“Case Presentation: Psychosis in Prader-Willi syndrome”

Presented at the IPWSO Mental Health ECHO on May 30, 2023.

The discussion explored:

• How does psychosis in PWS differ from e.g. schizophrenic psychosis?
• Are these really always psychoses, or rather do we see the expression of an overload reaction?
• What is the benefit of antipsychotic medications in PWS associated psychoses?

Find a full overview of the meeting here.

Janice Forster, MD, Board Certified General and Child and Adolescent Psychiatrist in private practice in Pittsburgh PA, USA
“Behavioural phenotype, psychiatric diagnosis, and a model for intervention”

Presented at the IPWSO Mental Health ECHO on May 30, 2023.

The learning objectives for this presentation were:

1. To describe the developmental onset and longitudinal course of phenotypic behaviours;
2. To identify psychiatric symptoms as distinct from phenotypic behaviour and response to stress;
3. To discuss an algorithm for intervention highlighting
– eco-environmental modification,
– strategies for improving coping skills,
– use of behaviour therapy, and
– management with psychotropic medication.

Find a full overview of the meeting here. The PDF of this presentation is available here.

Patrice Carroll, Director of PWS Services, Latham Centers, USA
“IPWSO Mental Health ECHO Summary April 25, 2023”

Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on April 25, 2023.

Find a full overview of the meeting here. 

Elizabeth Roof, MA, Research Associate, Department of Psychology at Vanderbilt University, Tennessee, USA
“Clinical Challenge: Compulsions in Prader-Willi Syndrome”

Presented at the IPWSO Mental Health ECHO on April 25, 2023.

The discussion explored:
• Best way to evaluate compulsions in PWS?
• What are the challenges to making a diagnosis of OCD in PWS?
• Best practices – interview vs. observation vs. questionnaire.
• Are we measuring symptoms or making a diagnosis in PWS?

Find a full overview of the meeting here. The PDF of this presentation is available here.

Deepan Singh, MD, Child, Adolescent, & Adult Psychiatrist, Vice-Chair of Ambulatory Psychiatry, Maimonides Medical Center, New York, USA
“Neurobiology of Prader-Willi Syndrome: Arriving at a Phenomenological Explanatory Model with Mechanistic Insights”

Presented at the IPWSO Mental Health ECHO on April 25, 2023.

The learning objectives for this presentation were:

1. Understanding the genetic and neurobiological causes of behavioural abnormalities in Prader-Willi syndrome;
2. Appreciating the central role of the hypothalamus and its connected brain structures in the behavioural, and cognitive manifestations of Prader-Willi syndrome;
3. Discussing the challenges and limitations of current treatments for Prader-Willi syndrome, and exploring potential new approaches;
4. Discuss a novel phenomenological explanatory model for abnormal response monitoring in PWS, based on the interplay between genetic, neural, and environmental factors.

Find a full overview of the meeting here. The PDF of this presentation is available here.

Tony Holland, President, IPWSO, University of Cambridge, UK
“IPWSO Mental Health ECHO Summary March 28, 2023”

Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on March 28, 2023.

Find a full overview of the meeting here. 

Marco O. Bertelli, MD, Scientific Director of the Research and Clinical Centre (CREA) of Fondazione San Sebastiano, Misericordia di Firenze, Florence, Italy
“Relating Quality of Life measurement to the lived experience of persons with PWS and their families”

Presented at the IPWSO Mental Health ECHO on March 28, 2023.

The presentation included:
• Quality of life outcome measures using the scores derived from quality of life indicators to assess ongoing and lasting changes to the “goodness” of people’s lives;
• There is no absolute method to measure quality of life and different approaches to measuring quality of life as an outcome may be taken according to the purpose of applying the measure;
• Different approaches to QoL conceptualization and measurement can be grouped into two: those based on shared aspects and those based on personal aspects;
• Whatever measure is used, it is best to interpret the results through the lens of the lived experience of individuals and families.

Find a full overview of the meeting here. The PDF of this presentation is available here.

Brian Hughes, Professor of Psychology, University of Galway, Ireland
“Well-being and Prader-Willi Syndrome”

Presented at the IPWSO Mental Health ECHO on March 28, 2023.

This presentation addressed:
• The various concepts intertwined with the idea of ‘well-being’;
• The different domains within which a person’s well-being can be considered;
• The specific challenges presented by PWS with respect to these domains of well-being;
• Well-being as more than ‘the absence of mental ill-health’

Find a full overview of the meeting here. The PDF of this presentation is available here.

Tony Holland, President, IPWSO, University of Cambridge, UK
“Introduction to the IPWSO Mental Health ECHO® Programme”

IPWSO President Tony Holland presents on the IPWSO Mental Health Network and the ECHO methodology as part of the first IPWSO Mental Health ECHO on March 28, 2023.