Development of a measure to assess the impact of epilepsy on people with an intellectual disability: the Glasgow Epilepsy Outcome Scale - Client version (GEOS-C).
Let clients with ID rate their own epilepsy burden—caregiver proxies often get it wrong.
01Research in Context
What this study did
The team built a 42-question scale that lets adults with intellectual disability speak for themselves. They asked clients how epilepsy changes their day-to-day life, not caregivers. The scale is called the Glasgow Epilepsy Outcome Scale – Client version, or GEOS-C for short.
What they found
The GEOS-C proved reliable. It showed that caregiver guesses often miss how the client really feels. When staff filled out the same questions, their answers did not line up with the client’s own ratings.
How this fits with other research
Pitetti et al. (2007) used the same build-and-test method to create the Pomona 18-indicator health set for adults with ID. Both papers show that solid tools can be made when clients are the reporters.
Prasher et al. (1995) already showed that people with mild ID can rate their own stress. GEOS-C now widens the idea to epilepsy impact, giving clinicians a second proof that self-report works.
Dumont et al. (2014) found that British adults with ID rate their health worse than the public does. GEOS-C gives you a way to dig into one reason—epilepsy—behind that poor rating.
Why it matters
You no longer need to guess how epilepsy shapes a client’s life. Hand the GEOS-C to any adult with ID who can point or speak. In five minutes you get data straight from the source. Use it before care-planning, medication changes, or quality-of-life reviews.
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02At a glance
03Original abstract
BACKGROUND: Epilepsy is common in people with intellectual disability, yet clinicians and researchers seldom obtain information directly from the client. The development and preliminary validation of a novel measure for use with people with mild to moderate intellectual disabilities is described. METHODS: Focus group methods (6 groups; 24 participants) identified issues of concern, and qualitative analysis (NUD*IST) was applied to derive items and themes for a draft scale. Psychometric scale development techniques were then used in a pilot study and subsequent field-testing to investigate validity and reliability (n = 46). RESULTS: A total of 148 issues of concern was reduced initially to 52 and then to 42 items using these methods. The derived scale comprised sub-scales reflecting (1) concerns about having seizures; (2) about injury; (3) about issues during; and (4) after seizures; (5) about medication; (6) about what people think; and (7) about daily life. Cronbach alpha for the Glasgow Epilepsy Outcome Scale - Client version (GEOS-C) was 0.92, and ranged from 0.64-0.81 for the sub-scales. Relatively weak associations (r <or= 0.40), between client and family carer, staff carer or clinician views, suggests that proxy reports are not good predictors of how people with epilepsy themselves are feeling. Preliminary validation suggests that the GEOS-C can discriminate on variables of clinical importance. CONCLUSIONS: The GEOS-C complements existing GEOS measures, can be completed in 5-15 min depending upon the level of support required, and may provide a valuable clinical and research tool. Further validational work and appraisal of sensitivity are required.
Journal of intellectual disability research : JIDR, 2006 · doi:10.1111/j.1365-2788.2005.00714.x