Prolonged disorders of consciousness: identification using the UK FIM + FAM and cohort analysis of outcomes from a UK national clinical database.

PURPOSE: 1: To determine whether Total UK FIM + FAM scores can identify patients in VS/MCS. 2: Using the identified cut-off points, to examine outcomes from specialist rehabilitation. METHODS: Part 1: Retrospective analysis of a consecutive clinical cohort (n = 388) presenting to a single specialist PDOC evaluation programme 2007-2021. FIM + FAM scores were analysed by PDOC diagnosis to define cut-off points for vegetative (VS) and minimally conscious states (MCS). Part 2: Multicentre cohort analysis of prospectively-collected clinical outcomes data from the UK Rehabilitation Outcomes Collaborative database of adults in PDOC registered 2011-2020 (n = 2384 in 68 centres). RESULTS: Cut-off points of ≤31 and 32-35 in FIM + FAM total scores respectively identified patients in VS/MCS-Minus and MCS-Plus. Approximately 365 PDOC patients are admitted to specialist rehabilitation units in England each year. By discharge, 43% have emerged into consciousness and demonstrate a wide range of disability. A few reached full independence, but the majority remained severely dependent. Nevertheless, those who emerged generated mean net life-time savings of over £436,000 (£400 million for this cohort). CONCLUSION: In absence of a dedicated PDOC registry, FIM + FAM scores can identify patients in VS/MCS at population level. Identifying those who emerge and providing timely rehabilitation generates cost-savings well-exceeding the cost of the evaluation/rehabilitation programme.Implications for rehabilitationThe UK National Health Service currently collects no systematic data to identify patients in PDOC, so we have no accurate information on how many patients there are, where they are managed or what their outcomes are.In the absence of more direct data, total FIM + FAM scores of < =31 and 32-35 respectively can be used to identify patients in vegetative and minimally conscious states.Of the 365 or so patients admitted to specialist rehabilitation units per year, 43% emerge into consciousness leaving about 150 patients per year in PDOC states that are likely to be permanent.Identifying those who emerge and providing timely rehabilitation generates cost-savings that pay for the entire PDOC evaluation/rehabilitation programme many times over.

Stratified management of hemiplegic shoulder pain using an integrated care pathway: an 18-year clinical cohort analysis.

PURPOSE: Hemiplegic shoulder pain (HSP) is a common but heterogeneous complication of acquired brain injury. Integrated care pathways (ICPs) can support clinical decision-making, prompting timely intervention to improve quality of care. This 18-year cohort analysis of clinical data presents outcomes from an ICP for management of HSP in an inpatient rehabilitation unit. MATERIALS & METHODS: Consecutive data were extracted for all eligible patients admitted between 2000-2018 (n = 333). Patients were categorised according to presentation pattern ("Floppy-subluxed" (59%), "Painful-stiff" (21%) or Mixed/not categorised(20%)) to help guide early management. Pain was assessed using the Shoulder-Q with pain ratings/10 in three domains: rest, night-time and movement. Patients with pain reduction ≥3 points in any domain were designated 'responders'. RESULTS: Mean baseline pain scores were 4.7 (95%CI 4.5,5.0). They were higher on movement (6.1(5.8,6.3)) than at rest (4.7(4.3, 5.0)) or at night (5.7(5.2,5.9)). Pain reduced significantly in all three domains (p < 0.0001) with a 65% overall response rate and complete resolution of pain 21-41%. There was a significant relationship between category of presentation pattern and management protocol used (X2 = 31.2, p < 0.0001). CONCLUSION: These high pain-response rates compare favourably to the literature (14-27%), suggesting that this stratified and integrated approach to HSP guides more effective management in this heterogeneous clinical presentation.Implications for RehabilitationTwo-thirds of the patients demonstrated a clinically-significant reduction in pain when managed using the integrated care pathway. These results compare favourably with pain resolution rates of well under one-third cited in the literature and suggest that the integrated care pathway leads to reduced pain and improved patient outcomes.Hemiplegic shoulder pain can result from a range of different clinical problems. The diversity of presentation and the range of required treatments are confirmed in this 18-year cohort analysis.Heterogeneity in presentation of HSP poses a challenge for both management and the evaluation of outcome. The results of this study suggest that a stratified approach helps to guide more effective management.

Worsening Perceptions of Family Connectedness and Parent Support for Lesbian, Gay, and Bisexual Adolescents.

OBJECTIVES: Lesbian, gay, and bisexual (LGB) adolescents often report compromised relations with their families. Given the recent changes in societal attitudes toward LGB individuals, in respect to rights for marriage and other legal statuses, we explore whether or not there has been a change in how LGB and heterosexual adolescents perceive their family relations over time. METHODS: Using the British Columbia Adolescent Health Survey from British Columbia, Canada (N = 99,373; M age = 14.8), we investigated the trends and disparities in family connectedness and mother/father support in four data sets from 1998 to 2013. RESULTS: We found that while levels of perceived family connectedness and parent support have increased for heterosexual adolescents since 1998, the same increases were not found for LGB adolescents. Among LGB participants, levels of perceived connectedness/support generally decreased in each survey waves, especially among females. Alarmingly, significant disparities in these perceptions remained for LGB youth over time. CONCLUSIONS: Our findings have implications for supportive interventions focused on LGB adolescents and their families and in particular, the role of father support.

Unhealthy weight control behaviors among youth: Sex of sexual partner is linked to important differences.

Unhealthy weight control behaviors (UWCBs) have been decreasing for most youth over time, yet little is known whether these behaviors have changed for sexual minority (e.g., non-heterosexual) youth. This is important because many studies have found that sexual minorities report some of the highest rates of UWCBs. To determine whether or not these behaviors have changed over time, given the extreme changes in social contexts over the past two decades, we utilised three waves of the Minnesota Student Survey (N = 55,597, Mage = 17). In doing so, we report trends, disparities, and changes in disparities of UWCBs. Overall, the prevalence of UWCBs has declined from 1999 to 2010 for all youth, but there are alarming disparities by sex of sexual partner. We found that both- and same-sex partnered male youth were more likely to fast, use diet pills, and vomit on purpose to lose weight compared to their opposite-sex partnered counterparts in all three survey years; specifically, both-sex partnered boys were up to 5.5× as likely to vomit on purpose compared to their opposite-sex partnered counterparts. Likewise, both-sex partnered girls were more likely to use diet pills and vomit on purpose to lose weight compared to opposite-sex partnered girls in all three survey years. Additionally, the disparity in fasting to lose weight widened for the same-sex partnered females compared to the opposite-sex partnered females from 1998 to 2004. This has implications for UWCB interventions and preventions targeted specifically towards sexual minorities.

Serial measurement of Wessex Head Injury Matrix in the diagnosis of patients in vegetative and minimally conscious states: a cohort analysis.

OBJECTIVE: To evaluate serial application of the Wessex Head Injury Matrix (WHIM) in diagnosis of prolonged disorders of consciousness (PDOC). Specifically, to determine whether the trajectory of change predicts outcome status, and whether the current hierarchical order of WHIM items is correct for this context. DESIGN: Analysis of prospectively gathered clinical cohort data. SETTING: Consecutive admissions to a tertiary in-patient neurorehabilitation service for evaluation of PDOC in real-life clinical practice, over a 10-year period (2004-2014). PARTICIPANTS: Patients (n=65) presenting in sudden-onset vegetative (VS) or minimally conscious states (MCS). Mean age 38.4 (sd14.1) years; male:female ratio 66%:33%. Aetiology of brain injury: 40(62%) traumatic; 12(19%) vascular; 11(17%) hypoxic; 3(3%) other. PRIMARY OUTCOME MEASURE: WHIM alongside detailed clinical evaluation. METHODS: The WHIM was administered serially by the multidisciplinary team throughout an in-patient evaluation programme (mean length 74 (sd42) days). Patients were divided into four groups, according to PDOC status on discharge (VS, MCS-Minus, MCS-Plus or Emerged). RESULTS: WHIM hierarchical scores (Most Advanced Behaviour (MAB)) correlated with PDOC status at discharge (Pearson r=0.49, p<0.001). In the original order, the MAB distinguished the 'VS', 'MCS' and 'Emerged' categories (analysis of variance (ANOVA) post hoc p<0.001), but not the subgroups of MCS-Minus and MCS-Plus. In stepwise regression analysis, MAB-Ex (excluding two items) accounted for 68% of the variance in PDOC status at discharge. On multilevel statistical modelling, trajectory of change in MAB separated the four PDOC groups, both at individual and at group level (p<0.001). After reordering of items, the new-order MAB accounted for more (73%) of the variance in PDOC status, and also distinguished significantly between MCS-Minus and MCS-Plus groups at discharge (p<0.002). CONCLUSIONS: The WHIM is a useful diagnostic tool in PDOC, and trajectory of change is an important predictor of outcome. The proposed new hierarchical order requires further evaluation in future multicentre analyses.

The Neurological Impairment Scale: reliability and validity as a predictor of functional outcome in neurorehabilitation.

PURPOSE: To examine the construct validity and inter-rater reliability of the Neurological Impairment Scale (NIS) and compare ratings by medical and multidisciplinary teams in a mixed neurorehabilitation sample. To assess its concurrent and predictive validity as a predictor of outcome and functional gains during inpatient rehabilitation. METHODS: The NIS was rated in a consecutive cohort of patients (n = 428) recruited from nine specialist neurorehabilitation units in London. Dimensionality and internal consistency were explored through principal components analysis with Varimax rotation. Inter-rater reliability and the relationship between NIS and functional outcome (UK Functional Assessment Measure (FIM + FAM)) were analysed in a sub-sample (n = 94) from one centre. RESULTS: Factor analysis identified two principal domains ("Physical" and "Cognitive") together accounting for 35% of the variance: their Cronbach's alpha values were 0.76 and 0.67, respectively. Inter-rater reliability was excellent for overall scores between doctors (ICC = 0.95 (95% CI = 0.91-0.97)) and acceptable between the medical and multidisciplinary team (ICC = 0.92 (95% CI = 0.88-0.95)). Change in NIS-physical score predicted 29% of the variance in functional gain (FIM + FAM change). CONCLUSION: These findings provide the first formal evidence for the validity and reliability of the NIS as a measure of neurological impairment for use in general neuro-rehabilitation settings. Its further application and exploration are now warranted. IMPLICATIONS FOR REHABILITATION: The extent of neurological recovery occurring during rehabilitation can make an important contribution to functional gains. In order to interpret measurement of functional outcome, we need to be able to identify changes at the level of impairment. Many of the available tools to measure severity of impairment are condition specific. The Neurological Impairment Scale (NIS) was developed for use across a broad range of disabling conditions alongside the UK FIM+FAM. This first formal examination of its psychometric properties provides evidence for its scalability, reliability and validity. The NIS has potential to provide useful information for case-mix adjustment and as a predictor of functional gain in general neurorehabilitation settings.

The Work-ability Support Scale: evaluation of scoring accuracy and rater reliability.

PURPOSE: The Work-ability Support Scale (WSS) is a new tool designed to assess vocational ability and support needs following onset of acquired disability, to assist decision-making in vocational rehabilitation. In this article, we report an iterative process of development through evaluation of inter- and intra-rater reliability and scoring accuracy, using vignettes. The impact of different methodological approaches to analysis of reliability is highlighted. METHODS: Following preliminary evaluation using case-histories, six occupational therapists scored vignettes, first individually and then together in two teams. Scoring was repeated blind after 1 month. Scoring accuracy was tested against agreed 'reference standard' vignette scores using intraclass correlation coefficients (ICCs) for total scores and linear-weighted kappas (kw) for individual items. Item-by-item inter- and intra-rater reliability was evaluated for both individual and team scores, using two different statistical methods. RESULTS: ICCs for scoring accuracy ranged from 0.95 (95 % CI 0.78-0.98) to 0.96 (0.89-0.99) for Part A, and from 0.78 (95 % CI 0.67-0.85) to 0.84 (0.69-0.92) for Part B. Item by item analysis of scoring accuracy, inter- and intra-rater reliability all showed 'substantial' to 'almost perfect' agreement (kw ≥ 0.60) for all Part-A and 8/12 Part-B items, although multi-rater kappa (Fleiss) produced more conservative results (mK = 0.34-0.79). Team rating produced marginal improvements for Part-A but not Part-B. Four problematic contextual items were identified, leading to adjustment of the scoring manual. CONCLUSION: This vignette-based study demonstrates generally acceptable levels of scoring accuracy and reliability for the WSS. Further testing in real-life situations is now warranted.

School-Based Strategies to Reduce Suicidal Ideation, Suicide Attempts, and Discrimination among Sexual Minority and Heterosexual Adolescents in Western Canada.

This study explored the relationships between the existence of and length of time since implementation of school-based Gay-Straight Alliances (GSAs) and explicit anti-homophobic bullying policies in secondary schools across British Columbia, Canada, with experiences of anti-gay discrimination, suicidal ideation and attempts among lesbian, gay, bisexual (LGB), mostly heterosexual, and exclusively heterosexual students. Analyses of the province-wide random cluster-stratified 2008 B.C. Adolescent Health Survey (n =21,70 8) compared students in schools with GSAs or policies implemented at least 3 years, and less than 3 years, with those in schools without GSAs or anti-homophobia policies, using multinomial logistic regression, separately by gender. LGB students had lower odds of past year discrimination, suicidal thoughts and attempts, mostly when policies and GSAs had been in place for 3+ years; policies had a less consistent effect than GSAs. Heterosexual boys, but not girls, also had lower odds of suicidal ideation and attempts in schools with longer-established anti-homophobic bullying policies and GSAs. Given consistently higher documented risk for suicidal ideation and attempts among LGB and mostly heterosexual adolescents, prevention efforts should be a priority, and school-level interventions, such as GSAs, may be an effective approach to reducing this risk, while also offering prevention benefits for heterosexual boys.

Engaging the hearts and minds of clinicians in outcome measurement - the UK Rehabilitation Outcomes Collaborative approach.

PURPOSE: This article explores the rationale for choosing the instruments included within the UK Rehabilitation Outcomes Collaborative (UKROC) data set. Using one specialist neuro-rehabilitation unit as an exemplar service, it describes an approach to engaging the hearts and minds of clinicians in recording the data. KEY MESSAGES AND IMPLICATIONS: Measures included within a national data set for rehabilitation should be psychometrically robust and feasible to use in routine clinical practice; they should also support clinical decision-making so that clinicians actually want to use them. Learning from other international casemix models and benchmarking data sets, the UKROC team has developed a cluster of measures to inform the development of effective and cost-efficient rehabilitation services. These include measures of (1) "needs" for rehabilitation (complexity), (2) inputs provided to meet those needs (nursing and therapy intervention), and (3) outcome, including the attainment of personal goals as well as gains in functional independence. CONCLUSIONS: By integrating the use of the data set measures in everyday clinical practice, we have achieved a very high rate of compliance with data collection. However, staff training and ongoing commitment from senior staff and managers are critical to the maintenance of effort required to provide assurance of data quality in the longer term.

Deriving a Barthel Index from the Northwick Park Dependency Scale and the Functional Independence Measure: are they equivalent?

OBJECTIVE: to examine the extent of agreement between Barthel Index scores derived from Northwick Park Dependency Scores (NPDS) and the Functional Independence Measure (FIM) ratings, in an inpatient setting. DESIGN AND SETTING: previously described conversion criteria were applied in a secondary analysis of a large existing dataset, gathered in a tertiary specialist inpatient neurorehabilitation unit. SUBJECTS: patients with neurological disabilities (N = 1347), mainly following acquired brain injury. MAIN MEASURES: comparison of Barthel scores derived from the NPDS (rated by nursing staff) and from parallel FIM scores (rated by the therapy team). RESULTS: very strong intraclass correlations were observed between the total scores (0.93, P<0.001); 95% limits of agreement ranged from -3.53 to 4.90. Item-by-item agreement (linear-weighted Cohen's kappa coefficients) ranged from 0.41 to 0.77, which represents 'moderate' to 'substantial' agreement. A significant bias towards lower NPDS-derived scores (median 10 (interquartile range (IQR) 6-16) compared with median 11 (IQR 7-16) for the FIM-derived score; Wilcoxon z 11.60, P<0.001) was considered most likely to reflect actual differences in patient performance observed by therapy and nursing staff. CONCLUSIONS: this study demonstrates good overall agreement between the Barthel Index ratings derived from NPDS and FIM scores. However, scores may be affected by differential performance with nursing and therapy staff, and should not automatically be regarded as equivalent.

Development and initial validation of the Northwick Park Therapy Dependency Assessment.

OBJECTIVES: To describe the development and initial validation of the Northwick Park Therapy Dependency Assessment (NPTDA) as a measure of therapy interventions in neurorehabilitation. DESIGN: An iterative development process, followed by comparison with systemic prospective activity analysis, and parallel application of prospective and retrospective scores. SETTING: A tertiary specialist inpatient neurorehabilitation service. PARTICIPANTS: A total of 37 patients (M:F 21:16, mean age 41.8 (SD 14.7) years) with complex neurological disability in two consecutive cross-sectional cohorts. METHODS: The NPTDA was developed and refined over 18 months, together with an algorithm that converts ordinal scores to estimated therapy hours/week. NPTDA-estimated hours were compared with 'actual' therapy hours/week, identified from activity analysis. In a subsequent cohort analysis, prospectively rated NPTDA scores (reflecting intended levels of intervention) were compared with retrospective NPTDA scores (actual interventions). RESULTS: NPTDA-estimated therapy hours/week were strongly correlated with those identified from activity analysis, for total scores (Spearman rho 0.77, P<0.0001), and also for all five subdomains for direct (hands-on) intervention (rho 0.70-0.93, P<0.0001). The initial test algorithm overestimated therapy hours (Wilcoxon z =3.9, P<0.001). After adjustment, reanalysis using a revised algorithm showed this bias to be removed (Wilcoxon z =1.4 P =0.15). Prospective and retrospectively applied total NPTDA scores were strongly correlated (rho 0.61, P<0.0001). Although intended levels of intervention were higher than those actually delivered (Wilcoxon z =3.30, P<0.001), the differences corresponded to real deviations from intended practice. CONCLUSION: In this initial evaluation, after revision of the algorithm, the NPTDA provided acceptable estimate of therapy interventions. Further evaluation is now required in other populations and settings.

From hype to mothballs in four years: troubles in the development of large-scale DNA biobanks in Europe.

This paper analyses the difficulties experienced by three large European DNA biobanks. The first, Icelandic-based deCode, generated immense commercial interest and intense ethical controversy. As a biotechnology company, deCode succeeded, but the Icelandic Health Sector Data Base failed. The second firm, Swedish UmanGenomics, marketed itself as the 'ethical' biotech company. Management problems including the inadequate recognition of intellectual property issues led to the company failing to secure adequate investment. The third and largest, UK Biobank, has, as a non-profit organization, not experienced these problems. But when the product - bio information--is marketed, the issue of ethically acceptable purchasers could well become contentious.