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Interview with Wendy Coster PhD, OTR/L, FAOTA
Can you tell us about your research interest in Patient Reported Outcomes and measurement?
Most of my research has involved children and adolescents, and my work in measurement started with the development of the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI was an important contribution to the field because, at the time, we didn’t have good measurement tools that told us what children were actually doing in their daily lives. My clinical experience was mostly school based, so my next step was to work on a measure that would fit within the federal regulations for special education, which resulted in the School Function Assessment (SFA).
Most recently, I have been working to update the PEDI so that it can be administered as a Computer Adaptive Test (CAT). I am also finishing work to develop a new participation measure called the Participation and Environment Measure for Children and Youth (PEM-CY). Having a measure of participation will provide important information about barriers and supports to participation of children with disabilities between the ages of 5-16. Currently there is a real gap in this area.
Can you describe a research project or paper of which you are particularly proud?
I am particularly proud of my research to develop the School Function Assessment (SFA), because the SFA really got people to think differently. Instead of focusing on what children can’t do, the SFA focuses on what they can do. This shift in focus promotes a more positive outlook when formulating next steps and goals. Thinking differently about disability in terms of a child’s capacity as opposed to deficits has made a difference in how we approach challenges and think about interventions in the school context. And, perhaps, in subtle ways this shift has altered the way that the children view themselves.
What do you find exciting about the Boston ROC?
My position as Director of the Patient-Reported Outcomes core at Boston ROC allows me to do the work I love. I believe in the importance of supporting and advising other researchers in thinking about the measures they use. Considerable effort and resources are expended to conduct research on interventions; however, is it critical to incorporate the best measure or measures for the research question in order to capture the effects of interventions. Our work at Boston ROC has done a great job of bringing measurement to the forefront so that it is elevated as a factor that is equally important to the success of a study as are the details of the research design.
What are you hoping to accomplish while you work with the Boston ROC?
I hope to have an impact on the design of future projects, especially for those who are dissatisfied with current measures. Our work at Boston ROC to develop new measures, as well as linking instruments to facilitate the ability to cross-walk between different measures are interests that I am excited to pursue.
What are your future goals?
In addition to my measurement work, I am interested in using newly available measures to study outcomes in specific populations. There is a great deal that we can learn about certain populations as we develop these measures. For example, the PEDI Responsibility CAT may be a great way to assess how well prepared teenager and young adults are for their transitions into adulthood. We are also currently validating the PEDI-CAT for children on the Autism Spectrum. The PEDI-CAT asks questions that can provide information on challenges in different life areas and, therefore, can serve as a guide to help parents develop strategies for effectively supporting their children’s growth and well-being.