An Automated Approach to Examining Conversational Dynamics between People with Dementia and Their Carers

The progressive neuropathology involved in dementia frequently causes a gradual decline in communication skills. Communication partners who are unaware of the specific communication problems faced by people with dementia (PWD) can inadvertently challenge their conversation partner, leading to distress and a reduced flow of information between speakers. Previous research has produced an extensive literature base recommending strategies to facilitate conversational engagement in dementia. However, empirical evidence for the beneficial effects of these strategies on conversational dynamics is sparse. This study uses a time-efficient computational discourse analysis tool called Discursis to examine the link between specific communication behaviours and content-based conversational engagement in 20 conversations between PWD living in residential aged-care facilities and care staff members. Conversations analysed here were baseline conversations recorded before staff members underwent communication training. Care staff members spontaneously exhibited a wide range of facilitative and non-facilitative communication behaviours, which were coded for analysis of conversation dynamics within these baseline conversations. A hybrid approach combining manual coding and automated Discursis metric analysis provides two sets of novel insights. Firstly, this study revealed nine communication behaviours that, if used by the care staff member in a given turn, significantly increased the appearance of subsequent content-based engagement in the conversation by PWD. Secondly, the current findings reveal alignment between human- and computer-generated labelling of communication behaviour for 8 out of the total 22 behaviours under investigation. The approach demonstrated in this study provides an empirical procedure for the detailed evaluation of content-based conversational engagement associated with specific communication behaviours.     

Associations of Polymorphic DNA Markers and Their Combinations with Multiple Sclerosis

Multiple sclerosis (MS) is regarded as multifactorial, polygenic disease; its development is the result of autoimmune and neurodegenerative processes which lead to multifocal lesions of the central nervous system. The aim of the study was to analyze associations between MS and polymorphic markers rs3129934 (C6orf10), rs1109670 (DDEF2/MBOAT2 gene), rs9523762 (GPC5 gene), rs28362491 (NFKB1 gene), rs10974944 (JAK2 gene), and rs2304256 (TYK2 gene). The material for the study was DNA samples of unrelated MS patients (N = 224) aged 17 to 67 years and individuals of a control group (N = 312) aged 18 to 66 years. Both samples were formed from the ethnic group of Russians. The results of the investigation demonstrated that, for women, MS was associated with genotypes rs3129934*C/T (p = 0.001, OR = 2.23), rs3129934*T/T (p = 0.028, OR = 4.04), and rs2304256*C/C (p = 0.049, OR = 1.6); for men, with genotype rs1109670*C/A (p = 0.017, OR = 2.06). In addition, using the APSampler algorithm, we identified combinations of alleles associated with increased risk of MS separately for women and men, in which the most frequent alleles of polymorphic markers were rs3129934*T, rs1109670*C, rs10974944*G, and rs2304256*C.     

Therapeutic Intervention in Multiple Sclerosis with Alpha B-Crystallin: A Randomized Controlled Phase IIa Trial

As a molecular chaperone and activator of Toll-like receptor 2-mediated protective responses by microglia and macrophages, the small heat shock protein alpha B-crystallin (HspB5) exerts therapeutic effects in different animal models for neuroinflammation, including the model for multiple sclerosis (MS). Yet, HspB5 can also stimulate human antigen-specific memory T cells to release IFN-γ, a cytokine with well-documented detrimental effects during MS. In this study, we explored in a Phase IIa randomized clinical trial the therapeutic application of HspB5 in relapsing-remitting MS (RR-MS), using intravenous doses sufficient to support its protective effects, but too low to trigger pathogenic memory T-cell responses. These sub-immunogenic doses were selected based on in vitro analysis of the dose-response profile of human T cells and macrophages to HspB5, and on the immunological effects of HspB5 in healthy humans as established in a preparatory Phase I study. In a 48-week randomized, placebo-controlled, double-blind Phase IIa trial, three bimonthly intravenous injections of 7.5, 12.5 or 17.5 mg HspB5 were found to be safe and well tolerated in RR-MS patients. While predefined clinical endpoints did not differ significantly between the relatively small groups of MS patients treated with either HspB5 or placebo, repeated administration especially of the lower doses of HspB5 led to a progressive decline in MS lesion activity as monitored by magnetic resonance imaging (MRI), which was not seen in the placebo group. Exploratory linear regression analysis revealed this decline to be significant in the combined group receiving either of the two lower doses, and to result in a 76% reduction in both number and total volumes of active MRI lesions at 9 months into the study. These data provide the first indication for clinical benefit resulting from intervention in RR-MS with HspB5. Trial Registration: ClinicalTrials.gov Phase I: NCT02442557; Phase IIa: NCT02442570     

Role Preferences of People with Multiple Sclerosis: Image-Revised,Computerized Self-Administered Version of the Control Preference Scale

Background

The Control Preference Scale (CPS) is the most frequently used measure of patients’ preferred roles in treatment decisions. We revised the original CPS and developed a new computerized patient self-administered version (eCPS). We used the eCPS to assess role preferences, and their determinants, in Italian and German people with multiple sclerosis (MS).

Methods

New cartoons were produced, based on MS health professional and patient input/feedback and previous findings, and pilot tested on 26 Italian and German MS patients. eCPS acceptability and reliability (weighted kappa statistic, wK) in comparison to the original tool, was determined in 92 MS patients who received both CPS versions in random order.

Results

The new cartoons were well accepted and easily interpreted by patients, who reported they based their choices mainly on the text and considered the images of secondary importance. eCPS reliability was moderate (wK 0.53, 95% confidence interval [CI] 0.40–0.65) and similar to the test-retest reliability of face-to-face administration assessed in a previous publication (wK 0.65, 95% CI 0.45–0.81). Higher education (odds ratio [OR] 3.74, 95% CI 1.00–14.05) and German nationality (OR 10.30, 95% CI 3.10–34.15) were associated with preference for an active role in the logistic model.

Conclusions

The newly devised eCPS was well received and considered easy to use by MS patients. Reliability was in line with that of the original version. Role preference appears affected by cultural characteristics and (borderline statistical significance) education.     

Traumatic Brain Injury: Unmet Support Needs of Caregivers and Families in Florida

Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.     

Yoga for Multiple Sclerosis: A Systematic Review and Meta-Analysis

While yoga seems to be effective in a number of neuropsychiatric disorders, the evidence of efficacy in multiple sclerosis remains unclear. The aim of this review was to systematically assess and meta-analyze the available data on efficacy and safety of yoga in patients with multiple sclerosis. Medline/PubMed, Scopus, the Cochrane Central Register of Controlled Trials, PsycINFO, CAM-Quest, CAMbase, and IndMED were searched through March 2014. Randomized controlled trials (RCTs) of yoga for patients with multiple sclerosis were included if they assessed health-related quality of life, fatigue, and/or mobility. Mood, cognitive function, and safety were defined as secondary outcome measures. Risk of bias was assessed using the Cochrane tool. Seven RCTs with a total of 670 patients were included. Evidence for short-term effects of yoga compared to usual care were found for fatigue (standardized mean difference [SMD] = −0.52; 95% confidence intervals (CI) = −1.02 to −0.02; p = 0.04; heterogeneity: I² = 60%; Chi² = 7.43; p = 0.06) and mood (SMD = −0.55; 95%CI = −0.96 to −0.13; p = 0.01; heterogeneity: I² = 0%; Chi² = 1.25; p = 0.53), but not for health-related quality of life, muscle function, or cognitive function. The effects on fatigue and mood were not robust against bias. No short-term or longer term effects of yoga compared to exercise were found. Yoga was not associated with serious adverse events. In conclusion, since no methodological sound evidence was found, no recommendation can be made regarding yoga as a routine intervention for patients with multiple sclerosis. Yoga might be considered a treatment option for patients who are not adherent to recommended exercise regimens.     

Development of a Community-Based Rehabilitation Intervention for People with Schizophrenia in Ethiopia

Background

Community-based rehabilitation (CBR) is a multi-sectoral strategy to improve the functioning and quality of life of people with disabilities. The RISE (Rehabilitation Intervention for people with Schizophrenia in Ethiopia) trial will evaluate the effectiveness of CBR for people with schizophrenia in Ethiopia. Nevertheless, the components of CBR that are both feasible and likely to prove effective in low and middle-income countries such as Ethiopia are unclear.

Methods

In this study intervention development work was undertaken to design a CBR intervention that is acceptable and feasible in the local context. The development work consisted of five phases. 1: Identify potential components of CBR for schizophrenia, 2: Situational analysis, 3: Determine feasibility of CBR (Theory of Change workshops with experts and local stakeholders), 4: Determine acceptability of CBR (16 in-depth interviews and five focus group discussions with people with schizophrenia, caregivers, health workers and community leaders) and 5: Synthesise results to finalise intervention. A Theory of Change map was constructed showing the causal pathway for how we expect CBR to achieve its impact.

Results

People with schizophrenia in rural Ethiopia experience family conflict, difficulty participating in work and community life, and stigma. Stakeholders perceived CBR to be acceptable and useful to address these problems. The focus of CBR will be on the individual developing the skills and confidence to perform their previous or desired roles and activities. To ensure feasibility, non-health professionals will be trained to deliver CBR and provide supervision, rather than mental health specialists. Novel components of CBR for schizophrenia included family intervention and dealing with distressing symptoms. Microfinance was excluded due to concerns about stress and exploitation. Community mobilisation was viewed as essential to ensure the effectiveness and sustainability of CBR.

Conclusion

Extensive formative research using a variety of methods has enabled the design of a culturally appropriate CBR intervention for people with schizophrenia that is acceptable and feasible.     

REMCARE: Pragmatic Multi-Centre Randomised Trial of Reminiscence Groups for People with Dementia and their Family Carers: Effectiveness and Economic Analysis

BackgroundJoint reminiscence groups, involving people with dementia and family carers together, are popular, but the evidence-base is limited. This study aimed to assess the effectiveness and cost-effectiveness of joint reminiscence groups as compared to usual care.MethodsThis multi-centre, pragmatic randomised controlled trial had two parallel arms: intervention group and usual-care control group. A restricted dynamic method of randomisation was used, with an overall allocation ratio of 1:1, restricted to ensure viable sized intervention groups. Assessments, blind to treatment allocation, were carried out at baseline, three months and ten months (primary end-point), usually in the person''s home. Participants were recruited in eight centres, mainly through NHS Memory Clinics and NHS community mental health teams. Included participants were community resident people with mild to moderate dementia (DSM-IV), who had a relative or other care-giver in regular contact, to act as informant and willing and able to participate in intervention. 71% carers were spouses. 488 people with dementia (mean age 77.5)were randomised: 268 intervention, 220 control; 350 dyads completed the study (206 intervention, 144 control). The intervention evaluated was joint reminiscence groups (with up to 12 dyads) weekly for twelve weeks; monthly maintenance sessions for further seven months. Sessions followed a published treatment manual and were held in a variety of community settings. Two trained facilitators in each centre were supported by volunteers. Primary outcome measures were self-reported quality of life for the person with dementia (QoL-AD), psychological distress for the carer (General Health Questionnaire, GHQ-28). Secondary outcome measures included: autobiographical memory and activities of daily living for the person with dementia; carer stress for the carer; mood, relationship quality and service use and costs for both.ResultsThe intention to treat analysis (ANCOVA) identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes (self-reported QoL-AD mean difference 0.07 (-1.21 to 1.35), F = 0.48, p = 0.53). Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a General Health Questionnaire-28 sub-scale at the ten month end-point (mean difference 1.25 (0.25 to 2.26), F = 8.28, p = 0.04). Compliance analyses suggested improved autobiographical memory, quality of life and relationship quality for people with dementia attending more reminiscence sessions, however carers attending more groups showed increased care-giving stress. Economic analyses from a public sector perspective indicated that joint reminiscence groups are unlikely to be cost-effective. There were no significant adverse effects attributed to the intervention. Potential limitations of the study include less than optimal attendance at the group sessions—only 57% of participants attended at least half of the intervention sessions over the 10 month period, and a higher rate of study withdrawal in the control group.ConclusionsThis trial does not support the clinical effectiveness or cost-effectiveness of joint reminiscence groups. Possible beneficial effects for people with dementia who attend sessions as planned are offset by raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions.

Trial Registration

ISRCTN Registry ISRCTN42430123     

Multiple Sclerosis Susceptibility Genes: Associations with Relapse Severity and Recovery

Objective

Patients with early multiple sclerosis (MS) have stereotyped attack severity and recovery. We sought to determine if polymorphisms in MS susceptibility genes are associated with these attack features or with the risk of a second attack.

Methods

503 white subjects evaluated within a year of MS onset were included in the study. The severity of and recovery from the first two attacks were determined based on published definitions. Seventeen MS susceptibility genes were genotyped at the UCSF MS Genetics laboratory. Each polymorphism was evaluated in multivariate ordinal models, adjusted for the other polymorphisms, for its association with attack severity and recovery. We also assessed if these polymorphisms were associated with increased risk of a second attack.

Results

The MPHOSPH9 polymorphism was associated with greater attack severity (odds ratios [OR] = 1.47, 95% CI [1.11, 1.94], p = 0.008), while the RGS1 and TNFRSF1A polymorphisms tended to be associated with reduced attack severity. The CD6 polymorphism tended to be associated with increased odds of worse attack recovery (OR = 1.25, 95% CI [0.93, 1.68], p = 0.13). In those who were HLA-DRB1-negative, the EVI5 polymorphism was associated with attacks of less severity; in HLA-DRB1 positive patients, EVI5 was associated with attacks of greater severity and worse recovery. The IL7R, TNFRSF1A, and GPC5 polymorphisms tended to be associated with having a second event within a year.

Conclusions

Some MS susceptibility polymorphisms may be associated with attack severity, recovery, or frequency. Further characterization of these genes may lead to a better understanding of MS pathogenesis and to a more individualized treatment approach.     

Prevalence of Comorbidities,Overweight and Obesity in an International Sample of People with Multiple Sclerosis and Associations with Modifiable Lifestyle Factors

Multiple sclerosis (MS) is a chronic neurological disorder, often affecting young people. Comorbid disorders such as depression, anxiety and hypertension are common and can affect disease course, treatment, and quality of life (QOL) of people with MS (PwMS). The associations between comorbidities, body mass index (BMI) and health outcomes are not well studied in MS, although research shows most PwMS are overweight. Most data on the prevalence of comorbidities and obesity in PwMS comes from North American populations. This study describes the prevalence of comorbidities, overweight and obesity and associations with modifiable factors in an international sample of PwMS recruited online through social media, MS societies and websites. The online survey consisted of validated and researcher-devised instruments to assess self-reported health outcomes and lifestyle behaviors. Of the 2399 respondents, 22.5% were overweight, 19.4% were obese and 67.2% reported at least one comorbidity, with back pain (36.2%), depression (31.7%), anxiety (29.1%) and arthritis (13.7%) most prevalent and most limiting in daily activities. Obesity and most comorbid disorders were significantly more prevalent in North America. Obese participants were more likely to have comorbidities, especially diabetes (OR 4.8) and high blood pressure (OR 4.5) but also depression (OR 2.2). Being overweight, obese, or a former, or current smoker was associated with an increase in the number of comorbidities; while healthy diet, physical activity (borderline significant) and moderate alcohol consumption were associated with decreased number of comorbidities. Increasing number of comorbidities was related to worse QOL, increased odds of disability and prior relapse. Obese PwMS had higher odds of disability and lower QOL. The associations between BMI, comorbidities and health outcomes are likely to be bi-directional and associated with lifestyle behaviors. Preventing and treating comorbid disorders and obesity in PwMS is warranted, and advice regarding healthy and risky lifestyle may assist in improving health outcomes.     

Microstructural Changes in the Striatum and Their Impact on Motor and Neuropsychological Performance in Patients with Multiple Sclerosis

Grey matter (GM) damage is a clinically relevant feature of multiple sclerosis (MS) that has been previously assessed with diffusion tensor imaging (DTI). Fractional anisotropy (FA) of the basal ganglia and thalamus might be increased in MS patients, and correlates with disability scores. Despite the established role of the striatum and thalamus in motor control, mood and cognition, the impact of DTI changes within these structures on motor and neuropsychological performance has not yet been specifically addressed in MS. We investigated DTI metrics of deep GM nuclei and their potential association with mobility and neuropsychological function. DTI metrics from 3T MRI were assessed in the caudate, putamen, and thalamus of 30 MS patients and 10 controls. Sixteen of the patients underwent neuropsychological testing. FA of the caudate and putamen was higher in MS patients compared to controls. Caudate FA correlated with Expanded Disability Status Scale score, Ambulation Index, and severity of depressive symptomatology. Putamen and thalamus FA correlated with deficits in memory tests. In contrast, cerebral white matter (WM) lesion burden showed no significant correlation with any of the disability, mobility and psychometric parameters. Our findings support evidence of FA changes in the basal ganglia in MS patients, as well as deep GM involvement in disabling features of MS, including mobility and cognitive impairment. Deep GM FA appears to be a more sensitive correlate of disability than WM lesion burden.     

Violence against People with Disability in England and Wales: Findings from a National Cross-Sectional Survey

Background

The recent World Report on Disability highlighted violence as a leading cause of morbidity among disabled people. However, we know little about the extent to which people with disability experience different violence types, and associated health/economic costs. The recent introduction of disability measures into the England&Wales victimization survey provided an opportunity to address this gap.

Methods and Findings

Analysis of the 2009/10 British Crime Survey (BCS), a nationally representative cross-sectional survey of 44,398 adults living in residential households in England&Wales. Using multivariate logistic regression, we estimated the relative odds of being a victim of past-year violence (physical/sexual domestic or non-domestic violence) in people with disability compared to those without, after adjusting for socio-demographics, behavioural and area confounders. 1256/44398(2.4%) participants had one or more disabilities including mental illness (‘mental illness’) and 7781(13.9%) had one or more disabilities excluding mental illness (‘non-mental disability’). Compared with the non-disabled, those with mental illness had adjusted relative odds (aOR) of 3.0(95% confidence interval (CI) 2.3–3.8) and those with non-mental disability had aOR of 1.8(95% CI: 1.5–2.2) of being a victim of past-year violence (with similar relative odds for domestic and non-domestic violence). Disabled victims were more likely to suffer mental ill health as a result of violence than non-disabled victims. The proportion of violence that could be attributed to the independent effect of disability in the general population was 7.5%(CI 5.7–9.3%), at an estimated cost of £1.51 billion. The main study limitation is the exclusion of institutionalised people with disability.

Conclusions

People with disability are at increased risk of being victims of domestic and non-domestic violence, and of suffering mental ill health when victimized. The related public health and economic burden calls for an urgent assessment of the causes of this violence, and national policies on violence prevention in this vulnerable group.     

Reasons for Unmet Need for Child and Family Health Services among Children with Special Health Care Needs with and without Medical Homes

Objectives

Medical homes, an important component of U.S. health reform, were first developed to help families of children with special health care needs (CSHCN) find and coordinate services, and reduce their children’s unmet need for health services. We hypothesize that CSHCN lacking medical homes are more likely than those with medical homes to report health system delivery or coverage problems as the specific reasons for unmet need.

Methods

Data are from the 2005-2006 National Survey of Children with Special Health Care Needs (NS-CSHCN), a national, population-based survey of 40,723 CSHCN. We studied whether lacking a medical home was associated with 9 specific reasons for unmet need for 11 types of medical services, controlling for health insurance, child’s health, and sociodemographic characteristics.

Results

Weighted to the national population, 17% of CSHCN reported at least one unmet health service need in the previous year. CSHCN without medical homes were 2 to 3 times as likely to report unmet need for child or family health services, and more likely to report no referral (OR= 3.3), dissatisfaction with provider (OR=2.5), service not available in area (OR= 2.1), can’t find provider who accepts insurance (OR=1.8), and health plan problems (OR=1.4) as reasons for unmet need (all p<0.05).

Conclusions

CSHCN without medical homes were more likely than those with medical homes to report health system delivery or coverage reasons for unmet child health service needs. Attributable risk estimates suggest that if the 50% of CSHCN who lacked medical homes had one, overall unmet need for child health services could be reduced by as much as 35% and unmet need for family health services by 40%.