Why this study is important to me
As many as 65% of individuals who have MS report some level of change in their cognitive abilities. In order to hold a job and navigate the demands of everyday living, we depend on our ability to learn and recall new information, pay attention, think quickly, and find the right word. Changes in the way we think hold tremendous importance for people with MS. Measuring these changes poses a challenge to both healthcare professionals and individuals living with MS, because other issues, such as depression, sense of self-sufficiency, and age, may affect how we think about or perceive our cognitive abilities. This study used the Perceived Deficits Questionnaire (PDQ) to examine the nature of perceived cognitive changes in individuals who have MS.
Who was in the study?
The authors looked at 183 study participants. Most of these participants were women (87.4%), non-Hispanic (90.2%), white (74.9%) of about 49 years of age, and, on average, they had been diagnosed with MS for slightly more than 12 years. Their top three most frequent cognitive complaints included “trouble holding phone numbers in my head”, “find my mind drifting”, and “forget what I came into the room for.”
What did the study show?
The most consistent predictor of the way in which an individual with MS perceives their cognitive abilities is “self-efficacy.” Self-efficacy refers to the belief of an individual in their own ability to effectively cope with challenging situations and involves the belief that one can successfully exert control over challenging circumstances.
Many previous studies of cognitive changes have linked them to depression, but the authors found relatively little association between depression and cognitive change. The study also refuted another common association of age with cognitive change: the authors found that complaints about cognitive problems actually appears to decrease with age. One possible explanation they suggest is that, “as time passes, people adjust to their cognitive changes not “perceiving” that they are as severe or they consider these cognitive problems more normal because their same-age peers start experiencing them as well.”
What should I do if I believe my cognitive abilities are changing?
Cognitive function makes up an important element of our quality of life and our ability to interact in social settings. Your healthcare provider can work with you to help to improve your perceived cognitive function. The Perceived Deficits Questionnaire (PDQ) can be administered and scored in about five minutes, and it provides a reliable, valid measure of perceived cognitive difficulties. As with most other aspects of living with MS, talking to your healthcare provider is essential to living well with MS.
Perceived Cognitive Deficits in a Sample of Persons Living With Multiple Sclerosis
Ashley Henneghan, Alexa Stuifbergen, Heather Becker, Vicki Kullberg, Nicole Gloris
Journal of Neuroscience Nursing
Purpose: The aims of this study were to describe the nature and diversity of perceived cognitive deficits using the Perceived Deficits Questionnaire (PDQ), to assess the reliability of the PDQ, and to explore self-reported predictors of PDQ scores in a large community-based sample of persons with multiple sclerosis (MS).
Materials and Methods: Persons with MS enrolled in a randomized controlled trial provided demographic data and completed the PDQ along with measures of cognitive and memory strategies, cognitive abilities, self-efficacy, and depressive symptoms and neuropsychological tests.
Results: Most of the 183 participants were non-Hispanic white women, approximately 49 years old, and diagnosed with MS 12.5 years prior. The most frequent cognitive complaints regarded trouble remembering telephone numbers, mind drifting, and forgetting why one came into a room. The PDQ scores were significantly related to self-rated cognitive abilities, depressive symptoms, self-efficacy, and use of cognitive strategies, but not to scores on neuropsychological performance tests. When controlling for other variables, self-rated cognitive abilities was the strongest, significant predictor of perceived cognitive deficits.
Conclusion: Persons with MS most frequently experience deficits related to short-term memory and attention. The PDQ total is a reliable measure of perceived cognitive deficits in persons with MS, is feasible for use by nurses in clinical settingsVcan be administered in approximately 5 minutes, and is easily scored.
Multiple sclerosis (MS) is a disease of the central nervous system that can interfere with cognitive processing, and as many as 65% of those with MS report some level of cognitive dysfunction.1 This high prevalence of cognitive dysfunction is especially important because MS is one of the most frequent causes of disability in early to middle adulthood, and cognitive problems are barriers to maintaining employment and daily living activities.1,2 The most common cognitive deficits reported by those with MS include difficulties with learning and recalling new information, attention, processing speed, and verbal fluency.1,2 Even ‘‘mild’’ impairments in any of these areas can have a significant impact on daily functioning and quality of life,3 aspects of patient care that are a large focus of nursing practice.
Despite the potential for negative impact, cognitive dysfunction is said to be underdiagnosed4,5 because of lack of assessment and difficulty administering specific cognitive tests in clinical settings. Clinicians have expressed interest in simpler measures. Self-report measures of cognitive deficits may be of benefit because they offer valuable patient information and can be used as a quick clinical tool. Unfortunately, there is limited research regarding self-reports of cognitive function among patients with MS.
One instrument used to evaluate cognitive function is the Perceived Deficits Questionnaire (PDQ), part of a much larger instrument for those with MS.11 Although the PDQ has been used in a number of studies as an outcome variable,4,6-9 limited work describes this measure or participants’ responses in more detail. The purposes of this study are to describe the nature and diversity of perceived cognitive deficits using the PDQ in a large community-based sample, to assess the reliability of the PDQ scale, and to explore self-reported predictors of PDQ scores in persons with MS.
Materials and Methods
The institutional review board at the University of Texas at Austin approved all study procedures. Men and women from 18 to 60 years old who had no MS-related exacerbations in the previous 3 months, were able to read and speak English, had access to the Internet, and self-reported cognitive limitations were recruited for a randomized controlled trial evaluating a cognitive rehabilitation intervention. Recruitment fliers were distributed throughout Texas at neurology clinics, self-help groups, and the National MS Society. To qualify, potential participants had to rate 5 or more of the 20 items on the PDQ as a 2 (‘‘sometimes’’) or greater.
Data Collection and Analysis
Eligible participants were mailed a consent form, and after their MS diagnosis was confirmed by a physician, they completed a mailed paper survey followed by inperson cognitive testing before randomization to control or intervention groups. The paper surveys included baseline demographic variables and self-report measures. After the paper surveys were completed, neuropsychological testing was completed in person by a trained tester. Data analyses were conducted using SPSS 23.0 and included descriptive statistics for individual items, internal consistency reliability analysis of self-report instruments, simple correlational analyses, and multiple regression modeling.