Development of a New Fatigue Scale for People with the Language Disorder Aphasia

What is it about?

New fatigue can arise after someone has a stroke—post-stroke fatigue. This fatigue is not just feeling tired, but instead is an overwhelming exhaustion that impacts everyday life. Post-stroke fatigue has a ripple effect, affecting for the worse thinking, movement, employment, ability to participate in life, and well-being. Also, after a person has a stroke, one impairment that can result is a language disorder called “aphasia.” People with aphasia have new difficulty with speaking, listening, writing, and/or reading. It’s important to note that aphasia does not change a person’s speech--which is how we say sounds and words, their physical properties (like voice, articulation, etc.). Language, on the other hand, is the system of symbols and words we use to communicate (like grammar, vocabulary, etc.). Aphasia is also not an intellectual deficit; it is not due to mental illness; and it is not related to muscles. People with aphasia often are not included in studies of post-stroke fatigue because of this language communication barrier. Many measurement tools are based on language, like surveys and self-rating tools a doctor might give a patient to complete. When a person’s language is impaired, as in aphasia, a provider or researcher who might otherwise administer such a tool could be at a loss for how to assess the person in front of them—and skip it altogether. Because of this, people with aphasia may not have a diagnosis of post-stroke fatigue, leading to lack of representation of the problem clinically and in research, and also lack of treatment for a very real problem. This study aimed to develop a more aphasia-accessible tool, so that people with aphasia can participate in fatigue measurement practices. The Fatigue Interference and Severity Scale for Aphasia (FISS-A) was developed using two focus groups: people with aphasia and speech-language pathologists. These groups gave feedback on the format, wording, administration, and response methods of a common self-report fatigue measure, the Fatigue Severity Scale (FSS). This feedback led to the recommendations for change, including simpler language, larger text spacing and font size, using images in addition to words, and allowing for responses like pointing in addition to spoken responses. In this way, the FISS-A was created. The FISS-A introduces wording and grammar changes to make the language easier to understand. It includes visuals, and also clear instructions for those administering the tool. A question was added to offer the chance for the person with aphasia who is completing the measure to comment on anything related to fatigue. Two simple visual scales were added to collect ratings of general fatigue severity, and the impact of fatigue on language.

Featured Image

Photo by Shane on Unsplash

Photo by Shane on Unsplash

Why is it important?

This study fills a gap by offering a new tool for measuring post-stroke fatigue in people with aphasia. The scale is designed specifically for people with aphasia, taking into account expert feedback and current evidence related to improvements in written material that can be made to increase understanding by people with aphasia. For tools to be useful, they need to be within reach of those using them. In this case, we hope the FISS-A will help capture a more realistic picture of what post-stroke fatigue in people with aphasia looks like, which could help treat the condition and allow for inclusion of this population in research.