None listed
Conditions
Brief summary
Cognitive impairment is one of the most common symptoms in multiple sclerosis (MS), being objectively confirmed on neuropsychological assessment in at least 50% of patients. It can be functionally disabling, and has been shown to significantly impact on patients’ capacity to function in a most domains of life, including personal self-care, mental health and mood, relationships, social and leisure activities, rehabilitation, driving, and employment. Cognitive impairment can also impact upon families and caregivers. In particular, MS patient cognitive impairment has been found to be significantly associated with caregiver distress, quality of life, and caregiver strain. The rehabilitation of cognitive impairment in MS is still in its infancy, and although neuropsychological assessment is often described as the first step in the rehabilitation of cognitive impairment, it can also be a form of therapeutic intervention in its own right. However, research into the direct therapeutic benefit of neuropsychological assessment as a rehabilitative intervention in MS is very limited. So, using an RCT approach, the present study aims to investigate the direct psychological benefit of neuropsychological assessment with feedback in patients with MS and their main caregivers immediately following the feedback session and up to 10 weeks later. It is proposed that the intervention will lead to an increase in patient and caregiver knowledge of the patient’s cognitive strengths and weaknesses, to an improvement in the patient’s use of adaptive psychological strategies for coping with the health problems caused by MS, and to more positive caregiving outcomes for the caregiver.
Interventions
Neuropsychological assessment with feedback. The main components include: a clinical interview, the administration of objective, psychometric tests and observation of behaviour during testing, & interpretaion of the results, followed by collaborative discussion of results and their practical implications with patients and caregivers, and agreeing upon recommedations for management. The intervention is delivered by qualified and experienced clinical neuropsychologists. It takes approximately 8-10 hours, and is spread over 2-3 face-to-face sessions (typically 2 sessions for the assessment and 1 for the feedback discussion) over a period of 1 - 2 weeks. It is delivered 6-7 weeks after randomisation. Tests administered for the neuropsychological assessment vary according to clinical need, and are selected from a core battery, as listed below: * Screening Examination for Cognitive Impairment in MS * Wechsler Adult Intelligence Test – IV * Wechsler Memory Scale – IV * Behavioral Assessment of the Dysexecutive Syndrome * Delis–Kaplan Executive Function System * Trail Making Test A & B * Paced Auditory Serials Additions Test * Reid Recognition Memory Test * Rey Auditory Verbal Learning Test * Rey Complex Figure (Copy and Delayed Recall) * Austin Maze * Boston Naming Test * COWAT Letter Fluency * Semantic Fluency (Animals) * Alternate Uses Test * STROOP * Wisconsin Card Sorting Test * Cognitive Estimation Test * Capacity to Consent to Treatment Instrument * DEX Questionnaire (Self & Other) * Spielberger’s State Trait Anxiety Inventory * Beck Depression Inventory * Geriatric Depression Scale * Dissociative Experiences Scale The feedback session comprises six main components: * A review of the purpose of the assessment, based on the referral question and including concerns and observations expressed by patients, caregivers, or referrers * An overview of the assessment process and how the neuropsychologist went about testing the patient’s cognitive and emotional functioning, and interpreting the assessment results * A description of the patient’s assessed strengths and weaknesses * An interpretation of the results, including severity of impairment, likely aetiology, role of the patient’s psychological and emotional state, and so forth * A discussion of the likely practical implications of the patient’s cognitive profile * Recommended strategies to manage significant cognitive impairment, and for staying well with MS, and the collaborative development of a general plan to implement agreed-upon strategies The broad content of the strategic management advice is based on the current neuropsychological rehabilitation literature in general, and the MS neuropsychological literature specifically and is constantly updated. The specific content of this advice is adapted to take account of: the nature and severity of the patient’s cognitive impairment; pre-morbid level of intelligence, personality, relevant beliefs; nature of their other impairments and disabilities; personal, vocational and educational history; age, sex and cultural background; nature of the environment in which they are functioning (including the people with whom they interact); the nature of their short-term and long-term life goals. The advice is usually strategic in nature, rather than specific (e.g. recommending that an appointment diary should be used, rather than which specific diary type should be used or how to set it up). Often, patients are referred on to other rehabilitation specialists, such as occupational therapists, clinical psychologists, or social workers, for further therapy or assistance with implementing the agreed-upon strategies. Thus, the recommendations that are provided by treating neuropsychologists contribute to an integrated rehabilitative care plan for individual MS patients.
Sponsors
Study design
Eligibility
Inclusion criteria
MS diagnosed by a neurologist Referral for a non-urgent neuropsychological assessment. Patients do not have to have a caregiver to participate.
Exclusion criteria
* History of a developmental intellectual disability * Severe cognitive impairment, including suspected MS-related dementia * Significantly impaired hearing despite use of prescribed hearing aids or other equipment * Impaired command of English due to non-English speaking background or aphasia * Severe dysarthria or significantly impaired voice volume * Current severe psychiatric impairment (e.g. severe depression, anxiety, or psychosis) * Impaired ability to manage the practical requirements of the study, such as an unstable medical or health condition causing delirium or hospitalizations, or a lack of reliable access to a telephone and mailbox due to unstable accommodation and/or support arrangements