Evaluating cognitive rehabilitation in multiple sclerosis: on the bumpy road to establishing evidence

There is marked enfeeblement of the memory; conceptions are formed slowly; the intellectual and emotional faculties are blunted in their totality,” Charcot (1877) reportedly noted about people with multiple sclerosis (MS) [1]. Despite these early observations of what we now refer to as ‘cognitive deficits’ and ‘mood disorders’, the magnitude and severity of these problems in MS were not considered seriously until over 100 years later. By the early 1990s, studies had begun to consistently demonstrate that people with MS reported cognitive problems

Group memory rehabilitation for people with multiple sclerosis: a feasibility randomized controlled trial

Objective: To assess the feasibility and effectiveness of a group memory rehabilitation programme combining compensation and restitution strategies. Design: Randomized controlled trial. Setting: Community. Participants: People with multiple sclerosis who reported memory difficulties were recruited. Interventions: A group memory rehabilitation programme, comprising ten 1.5-hour sessions, was compared with a waiting list control. Main measures: The primary outcome was the Everyday Memory Questionnaire. Secondary outcomes included the General Health Questionnaire 28 and MS Impact Scale administered four and eight months after randomization. In addition, those in the intervention group gave feedback about the intervention. Results: Forty-eight participants were recruited. They were aged 34–72 years (mean 54.3, SD 11.0) and 33 (69%) were women. There were no significant differences between the two groups on the Everyday Memory Questionnaire or MS Impact Scale (P > 0.05) at four or eight months after randomization. However, the intervention group reported significantly better mood than controls on the GHQ-28 at eight months (P = 0.04). Participants showed minimal benefit from the memory rehabilitation programme on quantitative measures but the intervention was well received, as indicated by positive feedback at the end of the intervention. Conclusions: There was no significant effect of the intervention on memory but there was a significant effect on mood. The results suggest a larger scale study is justified

Evaluating a person-centred chronic pain service using indices of reliable and clinically significant change

Background: Psychological interventions for chronic pain often require substantial individualisation, which can undermine links with the research evidence on which treatment is based. To ensure patients receive effective therapy, evaluation is needed. This paper demonstrates the use of individual level change indices, which may be more appropriate for assessing effectiveness of person-centred treatment than traditional group-level statistics. Aims: To evaluate the efficacy of a psychological chronic pain service at individual level and to recommend improvements for future service evaluation. Method: Indices of reliable and clinically significant change were used to assess outcomes on the HADS, CORE-10 andPSEQ. Results: Fifty-six out of 83 patients had usable outcome data. On the most widely administered outcome measure, the CORE-10, n=15 met reliable change and n=22 met clinically significant change criteria. Eighteen showed no reliable change. Only one person deteriorated. Conclusions: The person-centred treatment provided by this service was effective and achieved outcomes similar to published data from a structured group programme. However, missing data reduced the reliability of these conclusions andled to reduced usefulness of the evaluation for service planning. Recommendations for future evaluation are made

The factor structure of the Center for Epidemiological Study - Depression Scale in people with multiple sclerosis.

Background: Depression is common in multiple sclerosis (MS); however, its assessment is complicated by biological processes. In this context it is important to consider the performance of depression screening measures including that their factor structure is consistent with expectation.  This study sought to identify the factor structure of the Center for Epidemiological Study - Depression Scale (CES-D) in people with MS (PwMS). Methods: Participants (N = 493) were those who had consented to take part in a large three-phase longitudinal study of depression in PwMS. CES-D questionnaires completed at phase 1 of the study were utilised. An error in the questionnaire meant it was most appropriate to consider data for 19 of the 20 CES-D questionnaire items. The data was split into two samples by a random selection process to create an exploratory, model development sample and a validation sample. The first sample was subject to confirmatory factor analysis. Following examination of model fit and specification errors, the original model was modified. The revised model was tested in the confirmation sample to assess reproducibility. Results: The analysis results supported the original four factor solution for the CES-D, that is: Depressed Affect, Positive Affect, Somatic Complaints/Activity Inhibition, and Interpersonal Difficulties. Conclusions: The CES-D appears to have a coherent structure with which to examine depression in PwMS

A comparison of the content of memory rehabilitation groups for patients with neurological disabilities

The aim of the study was to compare the fidelity of manualised group memory rehabilitation programmes for participants with neurological disabilities. A sample of 11 neurological patients with memory problems, enrolled in a ran¬domised controlled trial comparing compensation, restitution and self-help treatments, were observed during group sessions. Time-sampling was used to record the activity of the participants and the content of the discussion at one minute intervals. There was a significant difference between groups in the amount of time the group leader and participants spent talking (p < .001). Par¬ticipants in the compensation and restitution groups spent significantly more time in memory rehabilitation discussion than participants in the self-help group (p < .001). There was also a significant difference between the amount of time spent discussing internal and external memory aids in the com¬pensation and restitution groups (p < .001). These results support the fidelity of the interventions provided. This study also highlights the usefulness of time-sampling as a method to record the content and activity in rehabilitation groups

Descriptions of memory rehabilitation group interventions for neurological conditions: a systematic review

Objective: To establish what aspects of group-based cognitive rehabilitation for memory problems are reported, and to develop a checklist for authors, which may to improve reporting of these interventions in future studies. Data sources: A systematic search was conducted on Web of Knowledge, CINAHL, MEDLINE, AMED, EMBASE and PsycINFO electronic databases (last search: 01/05/2015). Review methods: Articles were included if the sample were adults with a neurological disorder, the intervention was group-based cognitive rehabilitation for memory problems, and if the study was a randomised controlled trial. Articles were independently screened for inclusion and data extracted by two researchers, with the third researcher arbitrating any disputes. Results: Fourteen studies were included in this review. The reporting of certain aspects of an intervention was found to be poor, particularly in relation to: duration of the programme (6 of 14 studies did not report), the development of the intervention (7 of 14 studies did not discuss), and the content and structure of intervention (7 of the 14 studies did not provide details). Conclusion: This review found that the overall reporting of memory rehabilitation content and format is poor. Refinement and adaption of pre-existing checklists to capture aspects of cognitive rehabilitation programmes may help authors when reporting complex interventions. A draft checklist is provided that could be refined and validated in further research

Effectiveness of cognitive rehabilitation for people with multiple sclerosis: a meta-synthesis of patient perspectives

While previous randomised controlled trials and meta-analyses offer only limited evidence for the effectiveness of cognitive rehabilitation, qualitative studies examining patient perspectives report more positive outcomes. This meta-synthesis of qualitative studies examined patient perspectives of cognitive rehabilitation for memory, attention, and executive function problems in people with multiple sclerosis. Using set eligibility criteria, we screened electronic databases, reference lists, and academic networks for relevant papers. Seven papers (195 participants) were selected. Two independent researchers conducted quality appraisals of papers. Data analysis, guided by the thematic synthesis approach, yielded six main themes. These suggested that patients benefitted from the group environment in rehabilitation. Cognitive rehabilitation facilitated the participants’ reflection and awareness of their cognitive deficits, and was associated with increased knowledge and understanding of their illness. Increased strategy use was reported and associated with improvements in cognitive functioning and greater confidence and perseverance. Participants reported emotional and social improvements, and felt more optimistic. Overall, these changes had a positive impact on participants’ quality of life. This synthesis of qualitative studies indicates that people with multiple sclerosis who experience cognitive deficits benefit from cognitive rehabilitation programmes. This finding must, however, be viewed in light of the limitations of this meta-synthesis. The meta-synthesis was registered in the PROSPERO database under CRD42017040148

Rehabilitation of memory following brain injury (ReMemBrIn): study protocol for a randomised controlled trial

Background Impairments of memory are commonly reported by people with traumatic brain injuries (TBI). Such deficits are persistent, debilitating, and can severely impact quality of life. Currently, many do not routinely receive follow-up appointments for residual memory problems following discharge. Methods/Design This is a multi-centre, randomised controlled trial investigating the clinical and cost-effectiveness of a group-based memory rehabilitation programme. Three hundred and twelve people with a traumatic brain injury will be randomised from four centres. Participants will be eligible if they had a traumatic brain injury more than 3 months prior to recruitment, have memory problems, are 18 to 69 years of age, are able to travel to one of our centres and attend group sessions, and are able to give informed consent. Participants will be randomised in clusters of 4 to 6 to the group rehabilitation intervention or to usual care. Intervention groups will receive 10 weekly sessions of a manualised memory rehabilitation programme, which has been developed in previous pilot studies. The intervention will include restitution strategies to retrain impaired memory functions and compensation strategies to enable participants to cope with their memory problems. All participants will receive a follow-up postal questionnaire and an assessment by a research assistant at 6 and 12 months post-randomisation. The primary outcome is the Everyday Memory Questionnaire at 6 months. Secondary outcomes include the Rivermead Behavioural Memory Test-3, General Health Questionnaire-30, health related quality of life, cost-effectiveness analysis determined by the EQ-5D and a service use questionnaire, individual goal attainment, European Brain Injury Questionnaire (patient and relative versions), and the Everyday Memory Questionnaire-relative version. The primary analysis will be based on intention to treat. A mixed-model regression analysis of the Everyday Memory Questionnaire at 6 months will be used to estimate the effect of the group memory rehabilitation programme. Discussion The study will hopefully provide robust evidence regarding the clinical and cost-effectiveness of a group-based memory rehabilitation intervention for civilians and military personnel following TBI. We discuss our decision-making regarding choice of outcome measures and control group, and the unique challenges to recruiting people with memory problems to trials

Evaluation of Rehabilitation of Memory in Neurological Disabilities (ReMiND): a randomized controlled trial

OBJECTIVE:The evidence for the effectiveness of memory rehabilitation is inconclusive. The aim was to compare the effectiveness of two group memory rehabilitation programmes with a self-help group control. DESIGN:Single-blind randomized controlled trial. PARTICIPANTS:Participants with memory problems following traumatic brain injury, stroke or multiple sclerosis were recruited from community settings. INTERVENTIONS:Participants were randomly allocated, in cohorts of four, to compensation or restitution group treatment programmes or a self-help group control. All programmes were manual-based and comprised two individual and ten weekly group sessions. MAIN MEASURES:Memory functions, mood, and activities of daily living were assessed at baseline and five and seven months after randomization. RESULTS:There were 72 participants (mean age 47.7, SD 10.2 years; 32 men). There was no significant effect of treatment on the Everyday Memory Questionnaire (P = 0.97). At seven months the mean scores were comparable (restitution 36.6, compensation 41.0, self-help 44.1). However, there was a significant difference between groups on the Internal Memory Aids Questionnaire (P = 0.002). The compensation and restitution groups each used significantly more internal memory aids than the self-help group (P 0.05). CONCLUSIONS:There results show few statistically significant effects of either compensation or restitution memory group treatment as compared with a self-help group control. Further randomized trials of memory rehabilitation are needed