Assessing Communication Ability of Children with Angelman Syndrome
Dr. Bryce Reeve from Duke University is working on assessing the communication ability of children with Angelman Syndrome. He aims to develop a parent-reported measure of communication ability in order to evaluate treatment benefit for human clinical trials. The current measures available have limitations, such as lack of psychometric evidence and inability to differentiate between different levels of communication. Dr. Reeve plans to involve parents and experts in the field to gather feedback and develop a new measure that captures expressive, receptive, and pragmatic communication. The measure will undergo quantitative analysis to assess validity and reliability. The participation of parents is crucial in moving this research forward and improving the lives of children with Angelman Syndrome.
In this talk, we will discuss the work being done by Dr. Bryce Reeve and his team at Duke University to assess the communication ability of children with Angelman Syndrome. The goal of this research is to develop a clinical outcome assessment that can be used to measure communication before and after treatments in Angelman Syndrome.
Dr. Bryce Reeve is a professor of population health sciences and pediatrics at Duke University. He is the director of the Center of Health Measurement and is trained in psychometric methods. His research focuses on understanding the impact of diseases and treatments on the lives of patients and caregivers.
Importance of Communication Assessment
Dr. Reeve emphasizes the importance of assessing communication ability in children with Angelman Syndrome. He explains that while many scientists focus on cellular and molecular changes, his team looks at the holistic impact of the disease and its treatments on the lives of the children and their caregivers. This includes evaluating physical, mental, and social aspects of quality of life.
Patient-Focused Drug Development
Dr. Reeve discusses the concept of patient-focused drug development, where patients and caregivers are actively involved in the research and development process. He highlights the importance of involving parents in identifying the most important questions to address and the outcomes to measure in clinical trials.
Developing a Measure of Communication Ability
Dr. Reeve explains that his team is working to develop a parent-reported measure of communication ability for children with Angelman Syndrome. They have reviewed existing communication measures but have found limitations in terms of validity, reliability, and sensitivity to change. Therefore, they are developing a new measure that captures expressive, receptive, and pragmatic communication abilities.
Involving Parents in the Research
Dr. Reeve emphasizes the importance of involving parents in the research process. His team plans to conduct in-depth individual interviews with parents, clinicians, and speech-language pathologists to gather feedback on the types of communication abilities children with Angelman Syndrome possess. This feedback will inform the development of the measure.
The Research Process
Dr. Reeve outlines the key steps in the research process. These include understanding the concept of communication ability, writing clear and valid questions, conducting cognitive interviews with parents to refine the measure, and then conducting quantitative testing to assess validity and reliability. The team also plans to translate the measure for use in different countries.
Call for Participation
Dr. Reeve concludes by thanking parents for their time and participation in the research. He emphasizes that their involvement is crucial in creating valid and reliable measures that can assess treatment impact on children’s lives and the quality of life of their caregivers.
Assessing communication ability in children with Angelman Syndrome is a crucial step in evaluating treatment benefits. Dr. Bryce Reeve and his team are working diligently to develop a parent-reported measure that captures the diverse communication abilities of these children. Through the involvement of parents, they aim to create a measure that is meaningful and impactful in clinical trials.
- Title: Assessing Communication Ability of Children with Angelman Syndrome
- Author(s): Bryce Reeve
- Author(s)’ affiliation: Duke University School of Medicine
- Publication date: 2019-01-10
- Collection: 2018 FAST Science Summit