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Memory and thinking impairments are common in MS, affecting at least 50% of the population. Cognitive difficulties can be devastating to both a persons’ own quality of life, and the quality of life of their families and caregivers affecting employment, driving safety, relationships, mood, coping strategies, and the ability to remain independent.
Ms Wendy Longley was investigating the potential direct clinical benefit of a neuropsychological assessment with feedback for people with MS and their caregivers.
The study measured the effect of this assessment and feedback for improving understanding of the persons’ cognitive difficulties, and their knowledge of the best memory management strategies available. This study will also investigate the characteristics of those patients and caregivers who will benefit the most from this type of assessment, with a view to aiding clinical decision-making.
Each year, hundreds of people with MS self-refer for neuropsychological assessment, seeking clarity about the nature of suspected cognitive problems, and advice about how to manage these problems. Others are referred by concerned family members or health professionals. Yet, surprisingly, there is currently no clear scientific evidence that neuropsychological assessment with feedback, alone, provides the people with MS or their families and caregivers with any direct benefit.
Nonetheless, there is good evidence that neuropsychological assessment provides the neurologists and other healthcare providers with valuable information to give more relevant, effective and efficient treatment; hence there is evidence that neuropsychological assessment can confer indirect benefits to patients with cognitive impairments, including those with MS. Consequently, this research has assessed the direct clinical benefit of neuropsychological assessment with feedback as a specific intervention in its own right.
Ms Longley and her colleagues have investigated the different strategies that people with MS use to compensate for their memory difficulties and how that correlates with different styles of coping and other quality of life measures. Compensation measures can include using notes and lists, using ‘memory tricks’ such as rhyming cues, and rehearsal, relying on others and spending more time and effort in retrieving memories.
The team conclude that understanding the psychological factors involved in a person’s strategies for memory compensation are just as important as objective measures of memory impairment when planning how best to assist memory rehabilitation.
Recruitment of patients was very successful. 71 patients with MS and 53 caregivers participated in the randomised controlled trial part of the study. This RCT provides preliminary evidence for the psychological benefits of neuropsychological assessment with feedback as a therapeutic intervention in MS.
Two key factors contributed to the success of this study: 1) the intervention was delivered by expert clinical neuropsychologists experienced in MS, and 2) this assessment and feedback service was embedded within a well-established MS-specific multi-disciplinary team setting, thus contributing to a holistic approach to MS self-management.
The data was been presented at two conferences with one published paper and another underway.
Ms Longley said, ‘We are already using the data to refine the memory management work we do with our clients at MS Australia (NSW), and through sharing our findings as they become available with our national and international colleagues at conferences we hope they can also use this information to guide their work with people with MS.’
The significance of this research for individuals living with MS is that they will ultimately be provided with a better neuropsychological assessment and advice service that will be more effective and efficient in helping them to better manage and minimise the impact of cognitive impairment upon their quality of life.
Updated: 30 June 2014
Updated: 06 January, 2011
$140,000
3 years over 2011 - 2013
