The power of mentorship.

How one healthcare system became the first in the world to achieve a combination of Magnet recognition and Pathway to Excellence designation for all of its hospitals.

Development of a measure of therapy provision for spasticity management in the paretic lower limb - the Leg Therapy recording Schedule (LegTS).

PURPOSE: In rehabilitation studies, it is critical to understand the constituents of interventions. First, to enable replication of the work and second, to identify what treatments work best. The development of a tool to describe and quantify therapy interventions in the context of focal spasticity management is presented. METHODS: Potential intervention categories were identified from: (a) retrospective analysis of prospectively collected data from a cohort of patients (n = 62) receiving physical interventions in the context of botulinum toxin (BoNT) injection for leg spasticity and (b) cognitive de-briefing with Patient and Carer Advisory Group (PCAG) of patient and carer dyads (n = 8). Item reduction was achieved through consultation with a purposively-selected group of physiotherapists and occupational therapists (n = 16) in a two-round Delphi process. This was followed by review of findings by PCAG members. RESULTS: A list of 24 possible therapy categories were identified and then reduced, resulting in a tool with two domains: (1) postural management; four categories and (2) exercise and retraining; four categories. The Leg Therapy recording Schedule (LegTS) wording and presentation were refined for clinical and research use. CONCLUSIONS: The LegTS is designed to record therapy interventions for the paretic lower limb in the context of spasticity intervention. Content and face validity have initially been addressed within the development process. Implications for Rehabilitation Clinicians need to understand intervention effectiveness, and to do so, it is critical to capture all the components of a complex intervention. In clinical practice or research, patient experience measures are required to capture the complexity of intervention provided and monitor intervention effectiveness on a case by case basis. Clinicians involved in rehabilitation and management of focal spasticity in the leg can use the Leg Therapy recording Schedule (LegTS) to enable an understanding of the entirety of the intervention package provided.

Integrating palliative care into neurology services: what do the professionals say?

OBJECTIVES: Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards the new SIPC service. METHODS: Neurology and palliative care teams from six UK trial sites (London, Nottingham, Liverpool, Cardiff, Brighton and Chertsey) were approached via email to complete an online survey. The survey was launched in July 2015 and consisted of multiple choice or open comment questions with responses collected using online forms. RESULTS: 33 neurology and 26 palliative care professionals responded. Collaborations between the two specialties were reported as being 'good/excellent' by 36% of neurology and by 58% of palliative care professionals. However, nearly half (45%) of neurology compared with only 12% of palliative care professionals rated current levels as being 'poor/none'. Both professional groups felt that the new SIPC service would influence future collaborations for the better. However, they identified a number of barriers for the new SIPC service such as resources and clinician awareness. CONCLUSIONS: Our results demonstrate the opportunity to increase collaboration between neurology and palliative care services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this. TRIAL REGISTRATION NUMBER: ISRCTN18337380; Pre-results.

Staged residential post-acute rehabilitation for adults following acquired brain injury: A comparison of functional gains rated on the UK Functional Assessment Measure (UK FIM+FAM) and the Mayo-Portland Adaptability Inventory (MPAI-4).

OBJECTIVE: To compare the UK Functional Assessment Measure (UK FIM+FAM) and Mayo-Portland Adaptability Inventory (MPAI-4) as measures of functional change in patients with brain injury receiving a staged residential post-acute community-based rehabilitation programme. RESEARCH DESIGN: Longitudinal cohort study of consecutive admissions (N = 42) over 3 years. METHODS: Patients were assessed at admission and discharge/annual review. We examined groups according to stage of independence on admission: Maximum support (stages 1 and 2: N = 17); moderate/maximum self-care/household support (stage 3: N = 15); minimal self-care and moderate household/community support (stages 4-6: N = 10). RESULTS: Median (IQR) age: 50 (37-56) years. Male:female ratio: (71%:29%). Aetiology: stroke (50%), traumatic (36%) and other brain injuries (14%). Both tools demonstrated significant gains in overall scores and all subscales (p < 0.01). However, the UK FIM+FAM provides more detailed evaluation of personal activities of daily living and mobility, which were most relevant in clients admitted in graduation stages 1 and 2 of the programme, whereas the MPAI-4 was more sensitive to changes in adjustment and participation for clients admitted in the later stages (4-6). CONCLUSIONS: The UK FIM+FAM and MPAI-4 provide complementary evaluation across functional tasks ranging from self-care to participation. This study supports their use for longitudinal outcome evaluation in community residential rehabilitation services that take patients at different stages of recovery.

Conceptualization and Development of the Leg Activity Measure (LegA) for Patient and Carer Reported Assessment of Activity in the Paretic Leg.

BACKGROUND AND PURPOSE: The purpose of the paper is to develop a patient-reported outcome measure of active and passive function in the paretic lower limb with associated spasticity. METHODS: Potential items for inclusion were identified through (1) systematic review and analysis of existing measures and (2) analysis of the primary goals for treatment in a spasticity service. Ethical approval for re-evaluation of routinely collected data was received. Item reduction was achieved through consultation with a purposively selected group of experienced physiotherapists and occupational therapists (n = 16) in a two-round Delphi process. This was followed by a review of Delphi consultation findings by the Project Advisory Group consisting of patients and carers. RESULTS: Development of the leg activity measure (LegA) included two rounds of Delphi consultation, which resulted in a high degree of agreement (80% in round 2) between respondents in rounds 1 and 2. From an initial shortlist of 126 items, 29 items were initially identified for inclusion in LegA and subsequently refined to a 24-item (two sub-scales) tool consisting of nine passive function and 15 active function items. DISCUSSION: The Delphi consultation with clinicians experienced in this area of practice ensured content validity and appropriate reduction of items. In common with previous work in the upper limb, a 5-point ordinal scaling structure was chosen, with ratings based on activity over the preceding 7 days. The LegA is designed to measure passive and active function following focal interventions associated with spasticity in the lower limb. Content and face validity have initially been addressed within the development process. The next phase of development will involve formal evaluation of psychometric properties. Copyright © 2016 John Wiley & Sons, Ltd.

Exploring meanings of illness causation among those severely affected by multiple sclerosis: a comparative qualitative study of Black Caribbean and White British people.

BACKGROUND: Illness attributions, particularly for those living with life limiting illnesses, are associated with emotional adjustment or psychological distress. Few studies have examined attributions among people severely affected by multiple sclerosis (PwMS), and specifically among from diverse communities. This study aimed to explore and compare the presence and construction of meanings among Black Caribbean and White British PwMS. METHODS: Cross sectional qualitative interviews were conducted among Black Caribbean (BC) and White British (WB) PwMS with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach. RESULTS: 15 BC and 15 WB PwMS were interviewed. Attributions were complex with most PwMS reporting multiple explanations. Uncertainty, represents the first theme surrounding the aetiology of MS where participants constantly rehearsed the "why me?" question in relation to their illness, a number expressing considerable frustration. The second theme, 'logical and scientific', was voiced more often by WB PwMS and accounts for a range of genetic/viral influences, stress, environmental and lifestyle factors. Third, the 'supernatural' illness attribution theme departs from a biomedical perspective and was reported often among BC PwMS. This theme included the sub-categories of tests of faith and divine punishment, a view although exclusive to BC participants but was sometimes in conflict with notions of modernity. CONCLUSION: Our findings identify evidence of cross-cultural and intra-group diversity in relation to MS causation. A greater professional awareness of the processes used by PwMS from diverse communities to make sense of their situation will enable health care professionals to facilitate effective support for those in their care and channel relevant psychosocial resources to them. This requires heightened skills in communication and cultural competency.

Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia, and Acquired Brain Injury.

CONTEXT: Measurement and improvement of informal caregiver burden are central aims of policy and intervention. Burden itself is a complex construct, and total burden can differ by patient diagnosis, although how diagnosis affects different aspects of caregiver subjective burden is unclear. OBJECTIVES: To compare the subjective burden of caregivers across three diagnostic groups using the 22-item Zarit Burden Inventory. METHODS: We performed a secondary analysis of pooled cross-sectional data from four U.K. studies of informal caregivers of patients with advanced cancer (n = 105), dementia (n = 131), and acquired brain injury (ABI) (n = 215). Zarit Burden Inventory totals, subscales (personal and role strain), and individual mean scores were compared between diagnostic groups using the general linear model, adjusting for caregiver characteristics. RESULTS: Caregiver age (mean years [SD]: cancer 66.1 [12.0]; dementia 61.9 [13.4]; and ABI 53.8 [10.9]) differed significantly across diagnostic groups (P < 0.001); 81.9%, 36.6%, and 59.1% of caregivers were spouse/partners, respectively (P < 0.001). Total burden was highest in ABI caregivers and lowest in cancer (mean total score [SD]: cancer 23.3 [13.4]; dementia 27.9 [16.4]; and ABI 39.1 [17.3]) (P < 0.001). Subscale scores showed similar patterns (mean personal and role subscale scores [SD]: cancer 11.8 [6.9], 5.8 [4.8]; dementia 14.4 [8.8], 7.3 [5.7]; and ABI 18.7 [9.1], 11.8 [6.0]) (P < 0.001 for both subscales). Most (17 of 22) individual item scores differed by diagnosis group (P < 0.05), except concepts of duty, responsibility, and perception of financial situation. CONCLUSION: Our data show that total, subscale, and most individual elements of caregiver subjective burden differ between cancer, dementia, and ABI caregivers. This should be considered when designing future intervention strategies to reduce caregiver burden in these groups.

Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews.

BACKGROUND: Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring. OBJECTIVE: To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers. METHODS: Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring. RESULTS: Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and 'ticking along'. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive). CONCLUSION: Burden, resilience, needs and rewards are interrelated. Caregivers' ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive. CLINICAL IMPLICATIONS: Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.

Goal setting, using goal attainment scaling, as a method to identify patient selected items for measuring arm function.

OBJECTIVE: Following stroke or brain injury, goals for rehabilitation of the hemiparetic upper limb include restoring active function if there is return of motor control or, if none is possible, improving passive function, and facilitating care for the limb. To inform development of a new patient reported outcome measure (PROM) of active and passive function in the hemiparetic upper limb, the Arm Activity measure, we examined functional goals for the upper limb, identified during goal setting for spasticity intervention (physical therapy and concomitant botulinum toxin A interventions). DESIGN: Using secondary analysis of a prospective observational cohort study, functional goals determined between patients, their carers and the clinical team were assigned into categories by two raters. Goal category identification, followed by assignment of goals to a category, was undertaken and then confirmed by a second reviewer. PARTICIPANTS: Participants comprised nine males and seven females of mean (SD) age 54.5 (15.7) years and their carers. Fifteen had sustained a stroke and one a traumatic brain injury. RESULTS: Goals were used to identify five categories: passive function, active function, symptoms, cosmesis and impairment. Two passive function items not previously identified by a previous systematic review were identified. CONCLUSIONS: Analysis of goals important to patients and carers revealed items for inclusion in a new measure of arm function and provide a useful alternative method to involve patients and carers in standardised measure development.

Service use and costs for people with long-term neurological conditions in the first year following discharge from in-patient neuro-rehabilitation: a longitudinal cohort study.

BACKGROUND: Knowledge of the configuration and costs of community rehabilitation and support for people with long-term neurological conditions (LTNCs) is needed to inform future service development and resource allocation. In a multicentre prospective cohort study evaluating community service delivery during the year post-discharge from in-patient neuro-rehabilitation, a key objective was to determine service use, costs, and predictors of these costs. METHODS: Patients consecutively admitted over one year to all nine London specialised (Level 1) in-patient neuro-rehabilitation units were recruited on discharge. They or their carers completed postal/web-based questionnaires at discharge and six and twelve months later, providing demographic data and measures of impairment, disability, service needs and provision. This paper describes health and social care service use, informal care and associated costs. Regression models using non-parametric boot-strapping identified predictors of costs over time. RESULTS: Overall, 152 patients provided consistent data. Mean formal service costs fell significantly from £13,290 (sd £19,369) during the first six months to £9,335 (sd £19,036) from six-twelve months, (t = 2.35, P<0.05), mainly due to declining health service use. At six months, informal care was received on average for 8.2 hours/day, mean cost £14,615 (sd 23,305), comprising 52% of overall care costs. By twelve months, it had increased to 8.8 hours per day, mean cost £15,468 (sd £25,534), accounting for 62% of overall care costs. Being younger and more disabled predicted higher formal care costs, explaining 32% and 30% of the variation in costs respectively at six and twelve months. CONCLUSION: Community services for people with LTNCs carry substantial costs that shift from health to social care over time, increasing the burden on families. Prioritising rehabilitation services towards those in greatest need could limit access to others needing on-going support to promote their independence and reduce their reliance on families. This argues for greater investment in future rehabilitation services.

Comparisons of Costs between Black Caribbean and White British Patients with Advanced Multiple Sclerosis in the UK.

Background. Multiple sclerosis (MS) is now more common among black and minority ethnic groups in the UK but little is known about the costs of care amongst different ethnic groups. Objective. This study examined and compared service use and costs for people severely affected with MS from Black Caribbean (BC) and White British (WB) backgrounds in the UK and identified predictors of cost for both groups. Method. Population-based cross-sectional study of 43 BC and 43 WB patients with MS (EDSS ≥ 6) and their informal caregivers recruited from an MS service in southeast London. Interviews collected data on health and social service use and informal care support. Costs were calculated using UK unit cost data. Using regression analyses we compared costs between the ethnic groups and identified possible predictors of cost. Results. The mean (SD) costs for the WB and BC groups were £ 25,778 ( £ 39,387) and £ 23,186 ( £ 30,433), respectively. Results identified no significant difference in total cost between the two ethnic groups. The EDSS score alone was a significant predictor of cost. Conclusion. Similar costs between ethnic groups indicate that with regard to this MS service and geographical area, access to care was not affected by ethnicity.

A longitudinal, multicentre, cohort study of community rehabilitation service delivery in long-term neurological conditions.

OBJECTIVES: Part A: To pilot the use of a register to identify and monitor patients with complex needs arising from long-term neurological conditions. Part B: To determine the extent to which patients' needs for health and social services are met following discharge to the community after inpatient rehabilitation; to identify which factors predict unmet needs and to explore the relationship between service provision and outcomes at 12 months. DESIGN: A multicentre, prospective, cohort study surveying participants at 1, 6 and 12 months using postal/online questionnaires and telephone interview. SETTING: Consecutive discharges to the community from all nine tertiary, specialist, inpatient neurorehabilitation services in London over 18 months in 2010-2011. PARTICIPANTS: Of 576 admissions 428 patients were recruited at discharge: 256 responded at 4 weeks, 212 at 6 months and 190 at 12 months. MEASURES: Neurological Impairment Scale, The Needs and Provision Complexity Scale, The Northwick Park Dependency Scale, Community Integration Questionnaire, Zarit Burden Inventory. RESULTS: n=322 (75%) expressed willingness to be registered, but in practice less than half responded to questionnaires at 6 and 12 months (49% and 44%, respectively), despite extensive efforts to contact them, with no significant differences between responders and non-responders. Significant unmet needs were identified within the first year following discharge, particularly in rehabilitation, social work support and provision of specialist equipment. Dependency for basic care and motor and cognitive impairment predicted services received, together accounting for 40% of the variance. Contra to expectation, patients whose rehabilitation needs were met were more dependent and less well integrated at 12 months post discharge than those with unmet needs. CONCLUSIONS: Registration is acceptable to most patients, but questionnaires/telephone interviews may not be the most efficient way to reach them. When community resources are limited, service provision tends to be focused on the most dependent patients. REGISTRATION: The study was registered with the NIHR Comprehensive Local Research Network: ID number 7503.

The Needs and Provision Complexity Scale: a first psychometric analysis using multicentre data.

OBJECTIVE: A psychometric evaluation of the Needs and Provision Complexity Scale (NPCS). MAIN MEASURE: The NPCS is designed to evaluate both needs for health and social support (NPCS-Needs) and services provided to meet those needs (NPCS-Gets). DESIGN: A consecutive cohort of patients were recruited from nine specialist neurorehabilitation units in London. SUBJECTS: Four hundred and twenty-eight patients were assessed at discharge (63.1% males; mean age 49 years) of whom 73.6% had acquired brain injury (49.5% stroke/subarachnoid, 14.7% traumatic brain injury, 9.3% 'other acquired brain injury'), 8.9% spinal cord injury, 6.1% peripheral neuropathy, 4.9% progressive neurological and 6.3% other neurological conditions. RESULTS: The NPCS-Needs was completed by the clinical team at discharge and 212 patients reported NPCS-Gets after six months. NPCS-Gets repeatability was tested in a subsample (n = 60). Factor analysis identified two principal domains ('Health and personal care' and 'Social care and support') accounting for 66% of variance, and suggested a large general factor underpinning the NPCS. Internal consistency was high (alpha = 0.94) and repeatability acceptable. Intraclass coefficients for domain scores were healthcare 0.67 (95% confidence interval (CI) 0.48-0.80); personal care 0.83 (0.73-0.90); rehabilitation 0.65 (0.45-0.78); social/family support 0.66 (0.46-0.79) and environment 0.84 (0.74-0.90). Linear-weighted kappas for item-by-item agreement ranged from 0.42 to 0.83. Concurrent validity was demonstrated through correlations with measures of dependency and community integration. CONCLUSIONS: Notwithstanding a 50% response rate after six months, the NPCS has good internal consistency, a robust two-factor structure, acceptable test-retest reliability and initial evidence of concurrent validity.

Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of Black Caribbean and White British people.

OBJECTIVE: Multiple sclerosis is now more common among minority ethnic groups in the UK but little is known about their experiences, especially in advanced stages. We examine disease progression, symptoms and psychosocial concerns among Black Caribbean (BC) and White British (WB) people severely affected by MS. DESIGN: Mixed methods study of 43 BC and 43 WB people with MS (PwMS) with an Expanded Disability Status Scale (EDSS) ≥6 involving data from in clinical records, face-to-face structured interviews and a nested-qualitative component. Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) were calculated. To control for selection bias, propensity scores were derived for each patient and adjusted for in the comparative statistical analysis; qualitative data were analysed using the framework approach. RESULTS: Median EDSS for both groups was (6.5; range: 6.0-9.0). Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) based on neurological assessment of current EDSS scores identified BC PwMS were more likely to have aggressive disease (PI F = 4.04, p = 0.048, MSSS F = 10.30, p<0.001). Patients' reports of the time required to reach levels of functional decline equivalent to different EDSS levels varied by group; EDSS 4: BC 2.7 years v/s WB 10.2 years (U = 258.50, p = 0.013), EDSS 6∶6.1 years BC v/s WB 12.7 years (U = 535.500, p = 0.011), EDSS 8: BC 8.7 years v/s WB 10.2 years. Both groups reported high symptom burden. BC PwMS were more cognitively impaired than WB PwMS (F = 9.65, p = 0.003). Thematic analysis of qualitative interviews provides correspondence with quantitative findings; more BC than WB PwMS referred to feelings of extreme frustration and unresolved loss/confusion associated with their rapidly advancing disease. The interviews also reveal the centrality, meanings and impact of common MS-related symptoms. CONCLUSIONS: Delays in diagnosis should be avoided and more frequent reviews may be justified by healthcare services. Culturally acceptable interventions to better support people who perceive MS as an assault on identity should be developed to help them achieve normalisation and enhance self-identity.

Costs of caring for adults with long-term neurological conditions.

OBJECTIVES: To estimate and compare the costs of informal and formal care provided to adults with long term neurological conditions and to identify characteristics associated with these costs. DESIGN: Cross-sectional postal questionnaire survey. PARTICIPANTS: Family carers of 282 adults with sudden onset, progressive and stable/intermittent conditions were recruited through UK-wide voluntary organisations and neuroscience centres. METHODS: Carers provided demographic and condition specific information about the adults cared for. Informal care was measured with the Caregiver Activity Survey and formal service use with the Client Service Receipt Inventory. Costs were calculated and regression analyses identified demographic and clinical characteristics associated with cost. RESULTS: Annual informal care costs mean £82,620 (standard deviation 58,493) were 4 times higher than formal costs mean £18,117 (standard deviation 28,990). Caring for adults with sudden onset conditions and hidden/mixed impairments were both significantly associated with informal costs. Healthcare costs were significantly associated with having a sudden onset condition, greater dependency in activities of daily living and longer condition duration. Greater dependency was significantly associated with increased social care costs. CONCLUSIONS: The cost of caring for adults with long term neurological conditions is largely borne by families. Both health and social costs are higher for more dependent patients, endorsing the importance of developing specialist rehabilitation services that reduce dependency.

The Needs and Provision Complexity Scale: a multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability.

OBJECTIVE: To provide a brief overview of the Needs and Provision Complexity Scale (NPCS) and report its first application to describe the level of 'met' and 'unmet' health/social care needs, and to estimate their costs in community-based patients with complex neurological disability. DESIGN: A multicentre prospective cohort analysis. SETTING: Consecutive discharges to the community from the nine tertiary specialist inpatient neurorehabilitation units in London over 12 months (2010/2011). PARTICIPANTS: Patients responding at follow-up (n=211). Mean age 50.2(SD14) years, males:females 127/84. Diagnosis 157(74%) brain injury, 27(13%) spinal cord injury/peripheral neuropathy; 27(13%) other. PRIMARY OUTCOME MEASURE: The NPCS is a brief, pragmatic, directly costable instrument for measuring both an individual's needs for rehabilitation and support (NPCS-Needs) and the levels of service provided (NPCS-Gets) within a given period. METHODS: The 'NPCS-Needs' was completed by the treating clinical team at discharge. Patients and/or their carers self-reported 'NPCS-Gets' after 6 months by a postal/online questionnaire supported by a follow-up telephone interview. RESULTS: Needs for medical/nursing care and accommodation were generally well met. Significant shortfalls in provision were identified in the subscales of Rehabilitation (paired t test: t -9.7, p<0.001, effect size (ES)=-0.85), Social support (t -5.8, p<0.001, ES=-0.48) and Equipment (t -5.6, p<0.001, ES=-0.44). Item-level analysis demonstrated that the frequency of Personal care received exceeded predicted needs (Wilcoxon z=-3.3, p<0.001). In 80% of cases, this care was provided/paid for by families. Translated into mean costs/patient/year, the estimated underspends on Rehabilitation (-£2320) and Social support (-£1790) were exceeded >3.5-fold by excess costs of Personal care (£10 313) and Accommodation (£4296). CONCLUSIONS: The results identify underprovision of community-based rehabilitation and support services compared with needs, which may contribute directly to excess care burden and costs to family carers. The NPCS requires further evaluation but has potential use as a simple, directly costable tool to inform both clinical decision-making and population-based service planning and delivery.

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.

Can the Northwick Park Dependency Scale be translated to a Barthel Index?

OBJECTIVE: to develop and test an algorithm for conversion of the Northwick Park Dependency Scale (NPDS) to a Barthel Index. DESIGN AND SETTING: conversion criteria were developed to derive a Barthel Index from NPDS data. The criteria were then applied in two community-based datasets of NPDS and Barthel scores, gathered from carers/patients via postal questionnaires. A retrospective exploratory analysis (dataset A) was followed by prospective confirmatory analysis (dataset B). SUBJECTS: patients with neurological disabilities, mainly following acquired brain injury: dataset A (n = 225) and dataset B (n = 96). MAIN MEASURES: comparison of NPDS-derived Barthel scores with parallel directly rated Barthel scores. RESULTS: the exploratory analysis identified that one Barthel item ('Stairs') could not be derived from the NPDS items alone, and required minor adaptation of one of the five additional questions that are included to translate the NPDS into an assessment of community care needs (Northwick Park Care Needs Assessment, NPCNA). For the prospective confirmatory analysis, the NPCNA 'Stairs' question was adjusted to support full conversion. Very strong intraclass correlations were observed between the total 'direct' and 'derived' Barthel scores (0.97 (dataset A), 0.95 (dataset B), P<0.001); 95% limits of agreement ranged from -2.52 to 2.56 (dataset A) and -3.29-3.91 (dataset B). Item-by-item agreement (linear-weighted Cohen's kappa coefficients) ranged from 0.68 to 0.85 (dataset A) and 0.59-0.83 (dataset B), which represents 'substantial' to 'almost perfect' agreement. CONCLUSIONS: this study demonstrates that a Barthel Index can be reliably derived from NPDS and NPCNA data through a conversion algorithm which has now been built into the supporting software package.

Factor analysis and Rasch analysis of the Zarit Burden Interview for acquired brain injury carer research.

OBJECTIVE: To examine the dimensionality of the Zarit Burden Interview in a sample of carers of adults with acquired brain injury. DESIGN: A cross-sectional UK survey using postal questionnaires. PARTICIPANTS: A sample of 222 carers; 43 men (19.4%) and 179 women (80.6%); mean age 54 years. Types of brain injury included traumatic brain injury (49.5%), stroke (25.9%), brain infection (17.3%), hypoxia (4.1%), and "other" (3.2%). METHODS: Exploratory and confirmatory factor analysis and Rasch analysis. RESULTS: Unidimensionality was tested using confirmatory factor analysis, which showed a poor fit. The underlying structure of the Zarit Burden Interview was explored using principal components analysis and varimax rotation. This revealed 3 factors, although 1 comprised only 2 items. The 2 major factors identified were personal strain and role strain. They were then examined using Rasch analysis, which identified 2 brief and reliable unidimensional scales. There was no evidence of differential item functioning for different types of carer/brain injury. CONCLUSION: The Zarit Burden Interview is a promising mea-sure for the assessment of burden in carers of people with an acquired brain injury. It offers 2 reliable, brief subscales of personal strain and role strain for this purpose. However, it remains for these 2 brief subscales to be validated clinically in future research.

Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions.

OBJECTIVES: To assess six short-form versions of Zarit Burden Interview (ZBI-12, ZBI-8, ZBI-7, ZBI-6, ZBI-4, and ZBI-1) among three caregiving populations. STUDY DESIGN AND SETTING: Secondary analysis of carers' surveys in advanced cancer (n=105), dementia (n=131), and acquired brain injury (n=215). All completed demographic information and the ZBI-22 were used. Validity was assessed by Spearman correlations and internal consistency using Cronbach's alpha. Overall discrimination ability was evaluated using the area under the receiver operating characteristic curve (AUC). RESULTS: All short-form versions, except the ZBI-1 in advanced cancer (rho=0.63), displayed good correlations (rho=0.74-0.97) with the ZBI-22. Cronbach's alphas suggested high internal consistency (range: 0.69-0.89) even for the ZBI-4. Discriminative ability was good for all short forms (AUC range: 0.90-0.99); the best AUC was for ZBI-12 (0.99; 95% confidence interval [CI]: 0.98-0.99) and the second best for ZBI-7 (0.98; 95% CI: 0.96-0.98) and ZBI-6 (0.98; 95% CI: 0.97-0.99). CONCLUSIONS: All six short-form ZBI have very good validity, internal consistency, and discriminative ability. ZBI-12 is endorsed as the best short-form version; ZBI-7 and ZBI-6 show almost equal properties and are suitable when a fewer-question version is needed. ZBI-4 and ZBI-1 are suitable for screening, but ZBI-1 may be less valid in cancer.