Assessment scales for disorders of consciousness: evidence-based recommendations for clinical practice and research

Report of the American Congress of Rehabilitation Medicine, Brain Injury-Interdisciplinary Special Interest Group, Disorders of Consciousness Task Force: Seel RT, Task Force Chair, Sherer M, Whyte J, Katz DI, Giacino JT, Rosenbaum AM, Hammond FM, Kalmar K, Pape TL, Zafonte R, Biester RC, Kaelin D, Kean J, Zasler N. Assessment scales for disorders of consciousness: evidence-based recommendations for clinical practice and research.

Objectives

To conduct a systematic review of behavioral assessment scales for disorders of consciousness (DOC); provide evidence-based recommendations for clinical use based on their content validity, reliability, diagnostic validity, and ability to predict functional outcomes; and provide research recommendations on DOC scale development and validation.

Data Sources

Articles published through March 31, 2009, using MEDLINE, CINAHL, Psychology and Behavioral Sciences Collection, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Cochrane Central Register of Controlled Trials, Biomedical Reference Collection, and PsycINFO. Thirteen primary terms that defined DOC were paired with 30 secondary terms that defined aspects of measurement. Scale names, abbreviations, and authors were also used as search terms. Task force members identified additional articles by using personal knowledge and examination of references in reviewed articles.

Study Selection

Primary criteria included the following: (1) provided reliability, diagnostic validity, and/or prognostic validity data; (2) examined a cohort, case control, or case series sample of persons with DOC who were age older than or equal to 18 years; and (3) assessed in an acute care or rehabilitation setting. Articles were excluded if peer review was not conducted, original data were not reported, or an English language article was not available. The initial search yielded 580 articles. After paired rater review of study abstracts, guideline development was based on 37 articles representing 13 DOC scales.

Data Extraction

Rater pairs classified studies addressing diagnostic and prognostic validity by using the American Academy of Neurology 4-tier level of evidence scheme, and reliability by using a task force–developed 3-tier evidence scheme. An independent quality review of ratings was conducted, and corrections were made.

Data Synthesis

The Coma Recovery Scale-Revised (CRS-R), Sensory Stimulation Assessment Measure (SSAM), Wessex Head Injury Matrix (WHIM), Western Neuro Sensory Stimulation Profile (WNSSP), Sensory Modality Assessment Technique (SMART), Disorders of Consciousness Scale (DOCS), and Coma/Near-Coma Scale (CNC) have acceptable standardized administration and scoring procedures. The CRS-R has excellent content validity and is the only scale to address all Aspen Workgroup criteria. The SMART, SSAM, WHIM, and WNSSP demonstrate good content validity, containing items that could distinguish persons who are in a vegetative state, are in a minimally conscious state (MCS), or have emerged from MCS. The Full Outline of UnResponsiveness Score (FOUR), WNSSP, CRS-R, Comprehensive Levels of Consciousness Scale (CLOCS), and Innsbruck Coma Scale (INNS) showed substantial evidence of internal consistency. The FOUR and the CRS-R showed substantial evidence of good interrater reliability. Evidence of diagnostic validity and prognostic validity in brain injury survivor samples had very high levels of potential bias because of methodologic issues such as lack of rater masking.

Conclusions

The CRS-R may be used to assess DOC with minor reservations, and the SMART, WNSSP, SSAM, WHIM, and DOCS may be used to assess DOC with moderate reservations. The CNC may be used to assess DOC with major reservations. The FOUR, INNS, Glasgow-Liege Coma Scale, Swedish Reaction Level Scale-1985, Loewenstein Communication Scale, and CLOCS are not recommended at this time for bedside behavioral assessment of DOC because of a lack of content validity, lack of standardization, and/or unproven reliability.     

Participation in People Living With Spinal Cord Injury in Switzerland: Degree and Associated Factors

ObjectiveTo describe different domains of participation such as productive, leisure and social activities and describe sociodemographic and spinal cord injury (SCI)-related characteristics that are associated with participation in these domains in a large sample of community-dwelling individuals with SCI in Switzerland.DesignCross-sectional population-based survey within the Swiss Spinal Cord Injury Cohort Study. Participation in major life domains was measured by the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation). Univariable unconditional analysis and unbiased recursive partitioning were used to identify the predominant associations of sociodemographic and SCI-related characteristics with multiple dimensions of participation.SettingCommunity.ParticipantsSwiss residents aged 16 years or older and living with traumatic or nontraumatic SCI (N=1549).InterventionsNot applicable.Main Outcome MeasureThe USER-Participation, a 32-item self-report questionnaire with 3 scales (Frequency, Restrictions, and Satisfaction) to assess key domains of participation (productive, leisure, social).ResultsFrequency (median 34.5 out of 100) in productive, outdoor leisure, and social activities was reduced with distinctive perceived restrictions in work and education, sports, and partner relationships. Domestic leisure activities (65.4%) and maintaining social relationships (76.1%) were those activities most often performed and with least perceived restrictions. Participants were generally satisfied with their current daily life activities. Lower scores across all participation scales were associated with more severe SCI, higher age, being female, not having a partner, and lower level of education.ConclusionsThis study provides a thorough analysis of participation in major life domains of individuals with SCI in Switzerland. Different risk groups for reduced levels in participation in productive, leisure, and social activities were identified. This population-based evidence is instrumental to the better targeting of rehabilitation and policy interventions that aim to improve community participation.     

Disparities in diabetes management among medicaid recipients with intellectual and developmental disabilities (IDD): Evidence from five U.S. states

BackgroundDiabetes is one of the most common chronic conditions among adults. Little is known about the quality of diabetes care received by adults with intellectual and developmental disabilities (IDD).ObjectiveTo determine the extent to which the diabetes care needs are met for a population with both IDD and diabetes who are solely insured by Medicaid in five states (Iowa, Massachusetts, New York, Oregon and South Carolina).MethodsMedicaid administrative data in 2012 were used to identify Medicaid members (excluding dual eligibles) with diabetes and IDD in five states. Four diabetes care measures were compared between members with and without IDD using bivariate analyses. For those with diabetes and IDD, a logistic regression model was fitted for each state with the following predictors: age, sex, IDD subgroup, and occurrence of a specialist visit in the current or past year. A meta-analysis was then conducted to synthesize cross-state results.ResultsAcross the five states, 6229 (2%) of the 308,804 non-dual adult Medicaid members 18–64 years old with diabetes in 2012 also had IDD. Comparing those with IDD to their non-IDD peers on receipt of all four diabetes care measures showed differences by state, but state rates of overall adherence were very low, ranging from 16.6% to 28.5% of the population.ConclusionsMeta-analysis results identified specialist visits as a strong predictor of adults with diabetes and IDD receiving all four components of diabetes care. This important information should be considered in efforts to improve quality care for this population.     

A note on the mapping and quantification of the human brain corticospinal tract

Several diffusion tensor imaging tractography (DTT) have been adopted to construct the living human brain corticospinal tract. In this Note, we applied method “A” as recently described and used by “Lin CC, Tsai MY, Lo YC, et al. Reproducibility of corticospinal diffusion tensor tractography innormal subjects and hemiparetic stroke patients. Eur J Radiol 2013;82: e610–6.” We compared the results obtained with method “A” with those obtained using an anatomy-guided method “B” on two healthy adults. We also quantified the results using tract volume, and corresponding fractional anisotropy, mean, and radial diffusivities. We demonstrate that accurate mapping and quantification of CST requires at least two regions of interest one at the level of the medulla oblongata, a second at the level of pons, this assures termination at the motor spine and contamination with cerebellar and sensory pathways.     

Shifting the paradigm toward earlier treatment of multiple sclerosis with interferon beta

Background: Axonal damage occurs early in the course of multiple sclerosis (MS). Among untreated patients, 85% to 94% with a first clinically isolated syndrome (CIS) suggestive of MS and positive findings on magnetic resonance imaging (MRI) are at risk for developing MS.Objectives: This article reviews the current literature concerning early diagnosis of MS, the rationale for early immunomodulatory treatment of patients with a CIS and MRI evidence of central nervous system lesions, and the efficacy of early treatment with interferon beta (IFN-β).Methods: MEDLINE was searched from 1990 through the end of 2008 for papers published in English concerning the treatment of MS. Search terms included IFN-β, early treatment, CIS, and multiple sclerosis, and limits were set to return results related to human clinical trials in adults.Results: Three pivotal randomized controlled trials were identified, 2 involving IFN-β-1a (30 μg IM once weekly and 22 μg SC once weekly) and 1 involving IFN-β-1b (250 μg SC qod). In these trials, treatment with IFN-β effectively reduced the risk of developing MS by up to 50% in patients with a CIS. Furthermore, compared with delayed treatment, early treatment was associated with a reduced risk of disease progression: a 40% reduction in risk for confirmed disability progression at 3 years and a 41% reduction in risk of MS at 3 years.Conclusions: The evidence that axonal damage begins in the early stages of MS, before symptoms are evident, provides a rationale for early intervention with immunomodulatory agents. In 3 pivotal clinical trials, IFN-β effectively reduced the risk of developing clinically definite MS in CIS patients with a first demyelinating event and positive brain MRI.     

Changes in Internet Use Over Time Among Individuals with Traumatic Spinal Cord Injury

ObjectiveTo investigate the changes in total internet and mobile internet use over time and determine how demographic characteristics are related to changes in internet and mobile internet use among individuals with spinal cord injury (SCI).DesignCross-sectional analysis of a multicenter cohort study.SettingNational SCI Database.ParticipantsIndividuals with traumatic SCI with follow-up data collected between 2012 and 2018 (N=13,622).InterventionsNot applicable.Main Outcome MeasuresProportion of sample reporting internet use at all or through a mobile device over time and specifically in 2018.ResultsThe proportion of internet users increased from 77.7% in 2012 to 88.1% in 2018. Older participants (P<.001); those with lower annual income (P<.001), less education (P<.001), non-White race or Hispanic ethnicity (P<.001), or motor incomplete tetraplegia (P=.004); and men (P=.035) were less likely to use the internet from 2012-2018. By 2018, there were no longer differences in internet use based on race and ethnicity (P=.290) or sex (P=.066). Mobile internet use increased each year (52.4% to 87.7% of internet users from 2012-2018), with a participant being 13.7 times more likely to use mobile internet in 2018 than 2012. Older age (P<.001), income <$50,000 (P<.001), high school diploma or less (P=.011), or non-Hispanic White race/ethnicity (P=.001) were associated with less mobile internet use over time. By 2018, there were no differences in mobile internet use by education (P=.430), and only participants with incomes >$75,000 per year had greater odds of mobile internet use (P=.016).ConclusionsDisparities associated with internet access are decreasing likely as a result of mobile device use. Increased internet access offers an important opportunity to provide educational and training materials to frequently overlooked groups of individuals with SCI.