Can we make any changes to the wording of the EFS?
We ask researchers to avoid replacing EFS items with look-alike items. Commonly, in research studies involving data collection through interview, there are several different data sets and measurement instruments to be collected and this can be time consuming. Sometimes data is already available, but not in precisely the form needed to “reconstruct” a measure. To streamline the interview process, researchers sometimes make trade-offs, modifying the measure slightly or replacing it so that it can be used for their purposes.
For example, one of the items in the EFS is:
“With how many of the following activities do you require help?”
The item then lists eight instrumental activities of daily living. By comparison, study investigators may have another set of questions regarding functional independence for the same set of IADLs, based on a very similar but different question:
“Which of the following activities have you actually done without help over the past four weeks?”
There are many reasons why a person may not do a task aside from being unable. Another person may prefer to do it. The person may not feel need to it. There may have been no opportunity.
Trade-offs such as this are sometimes unavoidable. However, please keep in mind that the standard EFS license prohibits derivatives. We ask that investigators do their best to minimize any alterations to EFS wording, then seek permission from the copyright holder, Dr. Darryl Rolfson, before proceeding with their research. This will help to retain the integrity of the EFS. When alterations are approved, we ask that the change be described in the methods section of any publications that arise.
Is the EFS amenable to electronic data collection?
Yes, it is. The EFS has been built into electronic medical records and research databases. The challenge is in providing the right props so that the interview process doesn’t influence a different set of responses. For example, the CDT is best done by providing paper with a pre-drawn 10cm circle. The complete clock could then be scanned back into the record for future quality assurance. Assessors should use the other props described in the training.
What about the stigma of frailty?
Frailty is a stigmatizing condition, and researchers or individuals being interviewed may be uncomfortable when talking about it. Researchers should be sensitive to the potential for misunderstanding so that the study proceeds as intended. We recommend speaking about frailty as a health state rather than a personal characteristic, using phrases such as “living with frailty”, “being less resilient in certain aspects”, or “having less room for error”. Please avoid describing a person as “being frail”.
When frailty measures are used for ‘case-finding’, the tendency is to label the population as “frail” or “not frail”. Frailty status is just one of many aspects of a person’s health state. This may be avoided by simply describing them in terms of their EFS score (“EFS≥6” and “EFS≤5”). The EFS has five categories, which should emphasize how frailty is a continuous rather than dichotomized health state. Likewise, the EFS is designed to identify problems that can be addressed. When individuals are choosing whether to participate in a research study, these points may help address their concerns about stigmatization.
