Measuring Self-Reported Health Questions and Answers

Correlation with other measures

Q: When you field test this new measure, will you also have the respondents complete the SF-36 and BRFSS to see if it correlates with those measures?

A: We already have SF-36 and the BRFSS questions in this prepilot data, too. We are going to correlate those. We wouldn't want a perfect correlation or even something maybe higher than .80 or something, but I think that there should be a general correlation.

Is physical function included?

Q: For my understanding, did you include physical function from your scale or did you redefine items to make them less biased?

A: We thought what we were going to do was to exclude items that relate to function. We eliminated those that were obvious, actually cutting through a whole lot of items based on that.

Personal empowerment

Q: I am a grass roots organizer and work with children with Down Syndrome primarily. I don't have research background and for me it's very fascinating to hear it deconstructed today. The observation I have from the seven years I have been working in this field is, those parents that early on have access to a different way of constructing the experience move forward in a different way. They move forward as empowered actors and creators, and I see the link very, very strongly with resilience. I wonder if, over time, the research might start exploring what we in the disability community call the core competencies like self-determination and whatever else. The system does not generally provide those concepts. I feel that the articulation and the ability to be empowered and active really creates resilience and creates wellness.

A: Thank you. I think that's a great comment. In fact, when we go through some of our questions, some of that thinking was clearly a part of what we were thinking about as social health, probably mental health. It’s interesting that self-determination is not the same thing as health but as you said, it's a component to get you to sense of well-being. I think as we get deeper into some of our items, we went in with a mind-set of a broader sense of empowerment as a component of that, and we'll pay attention to keeping that in mind.

What level of involvement did people with disabilities have in this measure?

Q: What level of involvement did a person with disabilities have in this initial research process of gathering, in terms of which questions were going to be important and which needed to be reworked?

A: We took all of the items to people who are researchers and often those researchers have staff members with that disability. We also took it to national disability organizations. The next place that we wanted to get the check was when we went through and interviewed people. We were asking them; after they responded to the question - what did you understand?

Equal Application

Q: I was really taken by your comment about developing measures that were shorter and capable of being applied more frequently in order to be able to detect changes over time and be sensitive potentially to interventions. I wonder what you have in mind and how it relates to the trajectory and development of these instruments.

A: There's a huge amount of effort in this area right now because of the reauthorization of the Individuals with Disabilities Education Act in 2004. Based on various reports, government studies, and expert testimony, it specifically stated that there needed to be attention to a progress monitoring model or response to intervention ideas.