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Purpose. The purpose of this article is to explore three concepts namely dignity, human rights and capabilities and to argue for their relevance in advancing the theory and practice of rehabilitation. Method. A narrative review of selected academic writing on the three constructs is considered with respect to the rehabilitation literature. Results. Each concept is defined and technical terms are explained for readers unfamiliar with these topics. Salient aspects of academic or scientific writing on each of these three topics is summarised and attempts are made to integrate these with rehabilitation. Conclusions. Dignity, rights and capabilities are three concepts that have the potential to enhance theory development in rehabilitation. [ABSTRACT FROM AUTHOR]

Purpose. The aim of this article is to introduce rehabilitation professionals to the rapidly growing literature on human rights particularly as it relates to health and rehabilitation. The article aims to stimulate further discussion and debate concerning the place of human rights in rehabilitation practice. Method. Some important milestones in the recent history of the human rights movement are briefly outlined, and some important terms in the rights literature are explained. The Ward and Birgden model of the structure of human rights is then described as an example of a rights perspective that might have particular relevance for health and social services and rehabilitation. Results. A rehabilitation case study is presented as an example of how the Ward and Birgden model could have practical relevance when deciding on the most important outcomes for an individual in rehabilitation. Conclusion. Human rights are playing an increasing role in the struggle to improve health and healthcare globally. They also have important implications for rehabilitation practitioners and researchers and should form the core of any ethical framework for rehabilitation. It might even be argued that rights and dignity are themselves valued outcomes for rehabilitation. [ABSTRACT FROM AUTHOR]

Purpose. To apply Rasch analysis to the Beck Depression Inventory-II (BDI-II) responses of a mixed neurorehabilitation sample to determine its suitability for assessing depression among this group. Method. Three hundred and fifteen in-patients undergoing post-acute specialist in-patient rehabilitation at the Regional Rehabilitation Unit (RRU) of Northwick Park Hospital in North London were administered the Beck Depression Inventory. All patients were administered the BDI-II by a clinical psychologist using a large print version and taking as much time as patients required. Rasch analysis was completed using the RUMM2020 software. Where disordered thresholds were identified item rescoring was undertaken. Each item was also examined for Differential Item Functioning. Where misfit to model expectations was identified items were removed in an iterative fashion. The effect of any deletion upon person estimates was examined. Specific tests of unidimensionality were undertaken at each iterative phase. Results. Rescoring was necessary before Items 1-4, 6, 8-12, 20 and 21 showed ordered thresholds. Three items failed to satisfy model expectations - items 16 ( changes in sleeping pattern), 18 ( changes in appetite) and 21 ( loss of interest in sex) and were deleted - after which good overall fit to the Rasch model was observed. The three items deleted affected person estimates in a significant way such that the 21 item version in this group of patients may be biased because of multidimensionality. Conclusions. The BDI-II in a sample of patients undergoing neurorehabilitation satisfies unidimensional Rasch model expectations in an 18-item format. Some disordering of response categories was evident, but this evidence requires replication before any common rescoring option should be considered. [ABSTRACT FROM AUTHOR]

Purpose: Forearm tendon transfer surgery (FTTS) designed to restore independent hand function for tetraplegia is one intervention where assessment has tended to focus on outcomes of hand function and activity. To broaden the scope of assessment and further understanding of outcome following FTTS, this case study was designed to investigate the total life impacts of such surgical interventions from an individual perspective. Method: A single case study design was employed, utilizing a semi-structured interview and grounded theory methods to guide analysis. Results: All life domains described in the International Classification of Function, Disability and Health (ICF) emerged. Improvements were identified up to 2-3 years post surgery. FTTS was identified as the key among a number of rehabilitation facilitators. The participant's ongoing reference to preinjury attitude, ability, and experience highlighted a number of enduring characteristics that appeared to contribute to the positive outcome. Conclusion: Adequate assessment of interventions such as FTTS should encompass the ongoing monitoring of effects across all life domains, with consideration of effects in relation to preinjury status and other life impacts. This case study is considered a forerunner to a future case series investigation. The case series will include a diversity of participants in terms of the perceived positive or negative outcomes of upper limb reconstructive surgery and/or the decision to undergo/not undergo the surgical procedure(s). [ABSTRACT FROM AUTHOR]

In the present review we located and examined 22 articles reporting trials of treatments for bladder and bowel problems among people diagnosed with multiple sclerosis (MS). Of those studies, 16 included only people with MS. The wide range of measures and methods used precluded any quantitative analysis and hence a narrative review was adopted. There is limited research evidence to guide the treatment of bladder and bowel problems among people with MS. We consider that there is reasonable evidence that oral anticholinergic agents and intranasal desmopressin offer some short-term relief for overactive bladder and nocturia respectively For those patients with persistent or refractory symptoms there is limited evidence from single trials which suggest that intravesical administration of antimuscarinics or vanilloids, or injection of detrusor muscle with botulinum-A toxin, might be considered. Future research priorities should include: studies that focus on managing bladder and bowel symptoms with samples consisting exclusively of people with MS; research on conservative strategies for the management of bladder symptoms; intervention studies of all types with longer follow-up periods. Finally, there is an urgent need for further research on the management of bowel problems in MS. [ABSTRACT FROM AUTHOR]

Primary objective: To explore the way clinicians talk about the value and purpose of goal planning in rehabilitation for people with brain injury Research design: Grounded theory Methods and procedures: Nine clinicians from a range of professional backgrounds were interviewed. The interview data were analysed using the constant comparative method of grounded theory. Main outcomes and results: While the clinicians considered goal planning important, the expressed reasons for valuing goal planning were at times unclear. The term 'goal' referred to not one but many concepts within the rehabilitation environment; goal planning was used to serve a range of different purposes. Different reasons for undertaking goal planning were interrelated but at times conflicted, potentially creating tensions within the rehabilitation environment. Conclusions: Discussions around goal planning terminology should progress from service-level agreements towards more evidenced-based international consensus. Individual services might benefit from discussing and agreeing on the purpose for goal planning in their work. [ABSTRACT FROM AUTHOR]

PURPOSE: To determine a preliminary typology of purposes and mechanisms ascribed to goal planning in rehabilitation. To demonstrate the importance of making a critical distinction between these different purposes and mechanisms when reviewing or designing research on goal planning in rehabilitation. METHOD: A search of Medline, Embase, PsychINFO and CINAHL for articles on goal planning in rehabilitation. Articles were only included if they were about patient populations and made explicit statements regarding the function or purpose of goal planning in rehabilitation. Thematic analysis was used to qualitatively synthesise the purposes and mechanisms of goal planning described in the literature. RESULTS: Four major purposes for undertaking goal planning in rehabilitation are identified: (1) to improve patient outcomes (as determined by standardised outcome measures), (2) to enhance patient autonomy, (3) to evaluate outcomes, and (4) to respond to contractual, legislative or professional requirements. The first of these purposes is associated with four distinct mechanisms with the remaining three purposes appearing to relate to one underlying mechanism. CONCLUSIONS: This typology offers one approach for critically engaging with the wide-ranging issues in goal planning. Debate stemming from this work could facilitate systematic reviews of this area as well as guide research and application to practice. [ABSTRACT FROM AUTHOR]

PURPOSE: This article considers the role of theory and theory building in science and specifically in rehabilitation. It is argued that rehabilitation has tended to value theory testing over theory building and some evidence is presented for this.METHOD: Some general questions concerning the role of theory in scientific progress are discussed including: What is a theory? What is the role of theory in science? What makes a good scientific theory? How does theoretical change occur in science? Where relevant these questions are discussed in terms of examples from clinical rehabilitation research.RESULTS: Two important issues arising from the preceding discussion are then considered. First is the question of whether a general or unifying theory of rehabilitation is a desirable goal. The second concerns how we might begin to develop a coherent programme of theory building in rehabilitation.CONCLUSION: More time spent on rehabilitation theory building may enhance the fruits of empirical theory testing. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this article is to argue that self-regulation theory might offer a useful model for clinical practice, theory-building and empirical research on goal-setting in rehabilitation.Method: Relevant literature on goal-setting and motivation in rehabilitation is considered and some problematic issues for current practice and future research are highlighted. Carver and Scheier's self-regulation theory and its application to rehabilitation research is examined.Results: It is argued that self-regulation theory offers a robust theoretical framework for goal-setting and one in which the salient concepts of motivation and emotion are prominent.Conclusions: Self-regulation theory offers a potentially useful heuristic framework for rehabilitation research. [ABSTRACT FROM AUTHOR]

PURPOSE: The purpose of this article is to provide rehabilitation theorists and researchers with an introduction to some key theories of goals and motivation from the field of social cognition and to argue for increased dialogue between the two disciplines. METHOD: The use of goals and goal-setting in rehabilitation is briefly surveyed and the somewhat ambivalent attitude toward the concept of motivation in the rehabilitation literature is highlighted. Three major contributors to the study of goals and motivation from the field of social cognition are introduced and their work summarized. They include: (i) Deci and Ryan's Self-Determination Model; (ii) Emmons' work on goals and personal strivings, and (iii) Karniol and Ross' discussion of temporal influences on goal-setting. RESULTS: It is argued that there is a need for a greater emphasis upon theory development in rehabilitation research and that closer collaboration between researchers in rehabilitation and social psychology offers considerable promise. Instances where the three theories from social cognition might have relevance to clinical rehabilitation settings are described. Some possible directions for research are also briefly sketched. CONCLUSION: Both rehabilitation and social cognition have much to gain from increased dialogue. [ABSTRACT FROM AUTHOR]

Objective: In this study, we evaluated the psychometric properties of the Depression Anxiety Stress Scales 21 items (DASS-21) in a mild traumatic brain injury (mTBI) sample., Method: Treatment-seeking adults ( n  = 347) were recruited from outpatient rehabilitation services in New Zealand. Dimensionality, reliability, person separation index, and differential item functioning (DIF) of the DASS-21 were examined using Rasch analysis., Results: Initial analysis of the complete 21-item DASS showed poor overall fit due to problems with individual items. Fit to the Rasch model was excellent when treated as three composite scores. The stress subscale demonstrated adequate model fit, dimensionality and good reliability. For anxiety, fit was not good, reliability was unsatisfactory and DIF was evident on one item. When this item was removed, fit to the model was still inadequate as was reliability. DIF was also evident for depression, but when this item was removed, fit to the model was adequate., Conclusion: The DASS-21 is a psychometrically sound measure of distress and stress for adults seeking treatment following mTBI. Ordinal to interval score conversion tables are provided to increase the precision of measurement. When assessing depression in a mTBI population, a 6-item depression subscale is recommended. Caution is advised in using the DASS-21 anxiety subscale alone.

Background: Raising an autistic child is associated with increased parenting stress relative to raising typically developing children. Increased parenting stress is associated with lower parent wellbeing, which in turn can negatively impact child wellbeing., Aims: The current study sought to quantify parenting stress and parent health-related quality of life (HRQOL) in the autism context, and further understand the relationship between them by employing a relatively novel statistical method, Network Analysis., Methods and Procedures: This cross-sectional study involved 476 parents of an autistic child. Parents completed an online survey requesting information on parent and child characteristics, parent's perceptions of their autistic child's symptoms and problem behaviours, and assessed their parenting stress and HRQOL., Outcomes and Results: Relative to normative data, parent HRQOL was significantly lower in terms of physical health and mental wellbeing. The structure extracted by the Network Analysis indicated that child age and externalising behaviours were the main contributors to parenting stress, and that externalising behaviours, ASD core behavioural symptoms, and parenting stress predicted HRQOL., Conclusions and Implications: Parental responses to child-related factors likely determine parent HRQOL. Findings are discussed in relation to the transactional model, emphasising the importance of both parent and child wellbeing., Competing Interests: Declaration of Competing Interest None., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

The network theory of psychological disorders posits that systems of symptoms cause, or are associated with, the expression of other symptoms. Substantial literature on symptom networks has been published to date, although no systematic review has been conducted exclusively on symptom networks of schizophrenia, schizoaffective disorder, and schizophreniform (people diagnosed with schizophrenia; PDS). This study aims to compare statistics of the symptom network publications on PDS in the last 21 years and identify congruences and discrepancies in the literature. More specifically, we will focus on centrality statistics. Thirty-two studies met the inclusion criteria. The results suggest that cognition, and social, and occupational functioning are central to the network of symptoms. Positive symptoms, particularly delusions were central among participants in many studies that did not include cognitive assessment. Nodes representing cognition were most central in those studies that did. Nodes representing negative symptoms were not as central as items measuring positive symptoms. Some studies that included measures of mood and affect found items or subscales measuring depression were central nodes in the networks. Cognition, and social, and occupational functioning appear to be core symptoms of schizophrenia as they are more central in the networks, compared to variables assessing positive symptoms. This seems consistent despite heterogeneity in the design of the studies.

Background: Various assessment tools that explore and assess mindfulness are available. Keeping in view both the origin of and the literature surrounding mindfulness assessment tools, this study aimed to evaluate the workability of one widely researched tool, the Five Facet Mindfulness Questionnaire (FFMQ), for establishing cross-cultural generalizability and utility in the Indian context., Methods: We recruited 303 adults over 18 with proficiency in the Tamil language and no history of significant neurological trauma and/or psychiatric history. They completed a version of the 39-item FFMQ, which we had translated into Tamil (FFMQ-T). The psychometric properties of this scale were tested using the Partial-Credit model of Rasch analysis., Results: Iterative Rasch analysis could not resolve consistent misfit of the Observe facet items. Using a subtest approach, a higher-order fit of the FFMQ-T could be achieved after the deletion of additional items from each of the remaining four facets. The resulting final model for the FFMQ-T questionnaire was a four-factor solution with 22 items., Conclusions: This study concluded the usability of the new 22-item FFMQ-T. These results are not dissimilar to the other versions in similar populations, such as the Hindi version of the FFMQ. The ordinal-to-interval conversion tables provided here ensure that the FFMQ-T can be used with enhanced precision and parametric statistics., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© 2024 The Author(s).)

Purpose: Despite having the highest medical needs by population for weight loss treatment, Pacific patients in Aotearoa New Zealand face substantial levels of attrition in publicly funded weight loss surgery programs. In collaboration with the Auckland City Hospital bariatric surgery team, a Pacific-led preoperative weight loss surgery program was co-designed, delivered, and evaluated between 2020 and 2023., Materials and Methods: This was a single-arm, prospective co-designed evaluation study that took place at Auckland City Hospital in Aotearoa New Zealand. Participants were Pacific patients (n = 14) referred to the weight loss surgery program. Survey and video diaries were analyzed to determine if the program had the potential to increase Pacific patient retention through the preoperative stage of weight loss surgery, increase surgery completion rates, and improve the quality of treatment experiences., Results: Nine out of 14 participants attended all preoperative sessions. Six participants subsequently underwent weight loss surgery. Program components that had positive impacts on patient success and satisfaction were accessibility, information quality, having Pacific role models, cultural safety, and the group support system. The patients found the program to be culturally anchored and there was support for the implementation of the program going forward., Conclusion: This study demonstrated how a culturally anchored intervention can increase patient retention for those patients who may not respond to mainstream treatment. Adjusting existing preoperative weight loss surgery programs to integrate Pacific-led models of healthcare has the potential to increase Pacific patient resiliency to follow through with surgery., (© 2024. The Author(s).)

Purpose: Predicting emergence from prolonged disorders of consciousness (PDOC) is important for planning care and treatment. We used machine learning to examine which variables from routine clinical data on admission to specialist rehabilitation units best predict emergence by discharge., Materials and Methods: A multicentre national cohort analysis of prospectively collected clinical data from the UK Rehabilitation Outcomes (UKROC) database 2010-2018. Patients ( n  = 1170) were operationally defined as "still in PDOC" or "emerged" by their total UK Functional Assessment Measure (FIM + FAM) discharge score. Variables included: Age, aetiology, length of stay, time since onset, and all items of the Neurological Impairment Scale, Rehabilitation Complexity Scale, Northwick Park Dependency Scale, and the Patient Categorisation Tool. After filtering, prediction of emergence was explored using four techniques: binary logistic regression, linear discriminant analysis, artificial neural networks, and rule induction., Results: Triangulation through these techniques consistently identified characteristics associated with emergence from PDOC. More severe motor impairment, complex disability, medical and behavioural instability, and anoxic aetiology were predictive of non-emergence, whereas those with less severe motor impairment, agitated behaviour and complex disability were predictive of emergence., Conclusions: This initial exploration demonstrates the potential opportunities to enhance prediction of outcome using machine learning techniques to explore routinely collected clinical data. Implications for rehabilitationPredicting emergence from prolonged disorders of consciousness is important for planning care and treatment.Few evidence-based criteria exist for aiding clinical decision-making and existing criteria are mostly based upon acute admission data.Whilst acknowledging the limitations of using proxy data for diagnosis of emergence, this study suggests that key items from the UKROC dataset, routinely collected on admission to specialist rehabilitation some months post injury, may help to predict those patients who are more (or less) likely to regain consciousness.Machine learning can help to enhance our understanding of the best predictors of outcome and thus assist with clinical decision-making in PDOC.

Objective: To examine (1) the concurrent validity of the Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC) with the criterion standard Coma Recovery Scale-Revised (CRS-R) for outcomes of awareness in patients with prolonged disorders of consciousness (PDoC), (2) the relationship between MATADOC items and CRS-R function subscales in similar domains, and (3) determine if items/function subscales measure different constructs., Design: A prospective multicentric blinded study with repeated concurrent measures., Setting: Three inpatient rehabilitation units., Participants: Convenience sample of 74 adults with PDoC (N=74)., Main Outcome Measures: The MATADOC protocol elicits behavioral responsiveness using live music in 5 tasks. A total score ranges 0-10 scoring behaviors across 14-items. The CRS-R uses a language-based protocol and scores observed responses ranging from 0-23 in 6 function subscales. Both measures were delivered at 4 concurrent time points over 2 weeks., Results: Fair (κ=0.238, P=.006) ranging to moderate (κ=0.419, P<.001) significant agreement was found between CRS-R and MATADOC diagnostic outcomes. Fair-borderline moderate significant agreement was found for overall diagnostic outcomes across all diagnostic categories (κ=0.397, P=.001). There was moderate significant agreement between measures for motor scores (0.551≤κ≤0.571, P<.001) and visual outcomes (0.192≤κ≤0.415, .001≤P<.005) but no agreement for item/function subscale outcomes assessing auditory responsiveness. Exploratory factor analysis of all items showed 2 factors, suggesting that MATADOC and CRS-R measure the same underlying latent variable (awareness) in different ways and could complement each other for diagnosis and intervention purposes. This was supported by scale analysis, which showed increased reliability when the 2 scales are used together rather than separately., Conclusions: Unlike the CRS-R, the music-based MATADOC scores auditory localization for complexity of response and categorizes these behaviors as conscious rather than reflexive. The MATADOC may supplement the CRS-R, having a particular role in interdisciplinary programming for providing a more robust assessment of auditory responsiveness because of using nonverbal musical stimuli., (Copyright © 2023 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: Fear avoidance is associated with symptom persistence after mild traumatic brain injury (mTBI). In this study, we investigated whether fear avoidance was associated with other outcomes such as return to work-related activity (RTW)., Materials and Methods: We analyzed associations between fear avoidance and RTW 6-9 months after mTBI, in two merged prospective mTBI cohorts. Adult participants aged 16 or over (n=175), presenting to outpatient services in New Zealand within 3 months of their injury, who were engaged in work-related activity at the time of injury, were included. Participants completed the Fear Avoidance Behavior after Traumatic Brain Injury (FAB-TBI) questionnaire at enrollment and 6 months later. Associations between FAB-TBI scores and RTW outcome were analyzed using multivariate approaches., Results: Overall, 53% of participants had RTW by 6-9 months after mTBI. While early fear avoidance was weakly associated with RTW, persistent high fear avoidance between study assessments or increasing avoidance with time were associated with greater odds of still being off work 6-9 months after injury., Conclusions: Pervasive and increasing avoidance of symptom triggers after mTBI were associated with lower rates of RTW 6-9 months after mTBI. Further research is needed to better understand transition points along the recovery trajectory where fear avoidance behaviors fade or increase after mTBI.

Objective: To measure symptoms of anxiety, depression and hopelessness in a sample of young Pacific adults living in Auckland, New Zealand during the 2020/2021 COVID-19 pandemic and identify protective factors., Methods: Participants were 267 Pacific adults (58% female) who completed a survey online. Analyses included descriptive statistics, correlations, linear regression and symptom network analysis., Results: Around 25% of the sample scored in the range for moderate to severe anxiety and 10% for moderate to severe depression on standard measures. Almost 40% indicated that they found the first lockdown very stressful and 55% noted that some members of their family found it stressful. Only 16% worried about COVID-19 and their future quite a bit or constantly , while another 25% worried sometimes . Self-compassion and Pacific Identity had moderate, negative correlations, and Worry about COVID-19 had weak positive correlations, with anxiety, depression, hopelessness and perceived stress., Conclusion: These results suggest that, while the prevalence of depression and anxiety are quite high among this population, fostering ethnic identity and self-compassion in Pacific children and adolescents might protect against developing depression and anxiety.

Background: Prolonged Disorders of Consciousness (PDOC) resulting from severe acquired brain injury can lead to complex disabilities that make diagnosis challenging. The role of machine learning (ML) in diagnosing PDOC states and identifying intervention strategies is relatively under-explored, having focused on predicting mortality and poor outcome. This study aims to: (a) apply ML techniques to predict PDOC diagnostic states from variables obtained from two non-invasive neurobehavior assessment tools; and (b) apply network analysis for guiding possible intervention strategies., Methods: The Coma Recovery Scale-Revised (CRS-R) is a well-established tool for assessing patients with PDOC. More recently, music has been found to be a useful medium for assessment of coma patients, leading to the standardization of a music-based assessment of awareness: Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC). CRS-R and MATADOC data were collected from 74 PDOC patients aged 16-70 years at three specialist centers in the USA, UK and Ireland. The data were analyzed by three ML techniques (neural networks, decision trees and cluster analysis) as well as modelled through system-level network analysis., Results: PDOC diagnostic state can be predicted to a relatively high level of accuracy that sets a benchmark for future ML analysis using neurobehavioral data only. The outcomes of this study may also have implications for understanding the role of music therapy in interdisciplinary rehabilitation to help patients move from one coma state to another., Conclusions: This study has shown how ML can derive rules for diagnosis of PDOC with data from two neurobehavioral tools without the need to harvest large clinical and imaging datasets. Network analysis using the measures obtained from these two non-invasive tools provides novel, system-level ways of interpreting possible transitions between PDOC states, leading to possible use in novel, next-generation decision-support systems for PDOC., (© 2023. The Author(s).)

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.

Background: Prototype analyses of well-being have identified central characteristics and prototypicality for New Zealand teachers, lawyers, adolescents, and work well-being of nurses. What has not yet been explored is the broad construct of well-being in intensive care nurses., Aims: To identify intensive care nurses' conceptions of general well-being and investigate whether their general well-being is prototypically organized., Design: Prototype analysis., Methods: Three linked studies conceptualize well-being in this prototype analysis. In study 1, nurses reported features of well-being. Study 2 investigated the organization of these features. Study 3 sought confirmation of prototypical organization., Results: Sixty-five New Zealand nurses participated. For study 1 (n = 23), the most frequently reported elements of well-being included physical health (n = 26), work-life balance (n = 20), and personal relationships (n = 18). For study 2 (n = 25), the highest rated elements included mental and emotional health, [general] health, work-life balance, and love. Work-life balance, physical health, and personal relationships were in the top five most frequently reported and were rated in the top 12 most central. Overall, ratings of centrality and the number of times reported were positively correlated (r = 0.33, P < .005). For study 3 (n = 17), confirmatory analyses did not reach statistical significance (P = .15)., Conclusions: Physical health, work-life balance, and personal relationships are key characteristics of well-being for intensive care nurses. Mental, emotional, and general health and work-life balance were considered most important for well-being., Relevance to Clinical Practice: Physical health, work-life balance, and personal relationships are key characteristics of well-being for intensive care nurses. These characteristics of the broad construct of well-being are helpful in both defining and identifying conceptual models of well-being that may be used to inform the development and measurement of well-being programmes., (© 2021 British Association of Critical Care Nurses.)

Depression and anxiety are common sequelae of stroke, occurring in at least one-third of patients. This study evaluated the acceptability and feasibility of providing mindfulness training (MT) to stroke survivors with the aim of reducing depression and anxiety. Following a six-week one-on-one MT course, 17 participants were interviewed. The median age of participants was 71, and 10 participants were male. This paper focuses on participants' expectations of the MT and their views about its impact on their everyday lives. Conventional content analysis was used for coding and analysis. A single theme, Seizing rehabilitation opportunities, was captured in relation to expectations of MT, and four themes provided information relating to participants' perceived impact of the course: Calming the mind , Reduced reactivity , Remedying physical symptoms , and Not quite there yet .Most participants knew little about mindfulness before the MT and did not have specific goals in mind when volunteering to take part. The findings suggest that most participants considered MT beneficial through reducing stress and giving them additional skills to cope with their everyday lives. A tailored mindfulness intervention may be a useful adjunct to other rehabilitation therapies for stroke survivors.

Dementia is a major health concern globally and cross-culturally with progressive decline in cognition, mobility and communication. There are few interventions for end-stage dementia (ESD) although music interventions have been observed to be accessible for people with mid to late-stage dementia. The lack of protocols and measures suited to ESD has limited research into the effects of music therapy. Measure sensitivity to minimal responsiveness is one limitation to the use of existing music intervention measures with ESD. This exploratory study examined the clinical utility of the Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC) for use with people with end-stage dementia, including preliminary reliability and validity. The MATADOC is a standardized assessment for minimally responsive patients with disorders of consciousness and may be useful for ESD. Using repeated measures with blinded MATADOC-trained raters, MATADOC data were collected with a small convenience sample of people with ESD in a residential care setting. Clinical utility data were collected from the raters and evaluated using a multidimensional model. To explore its functionality, MATADOC outcomes were compared to another measure for music interventions in dementia. The MATADOC may be useful for assessing functioning and responsiveness to music interventions for people with ESD without the risk of floor effects. Modifying the MATADOC protocol and assessment documentation prior to testing with a larger sample will enhance its sensitivity specific to ESD and age-related needs, providing a new music-based ESD assessment.

Background: Patients who have had prolonged stays in intensive care have ongoing rehabilitation needs. This is especially true of COVID-19 ICU patients, who can suffer diverse long-term ill effects. Currently there is no systematic data collection to guide the needs for therapy input for either of these groups nor to inform planning and development of rehabilitation services. These issues could be resolved in part by the systematic use of a clinical tool to support decision-making as patients progress from the Intensive Care Unit (ICU), through acute hospital care and onwards into rehabilitation. We describe (i) the development of such a tool (the Post-ICU Presentation Screen (PICUPS)) and (ii) the subsequent preparation of a person-centred Rehabilitation Prescription (RP) to travel with the patient as they continue down the care pathway., Methods: PICUPS development was led by a core group of experienced clinicians representing the various disciplines involved in post-ICU rehabilitation. Key constructs and item-level descriptors were identified by group consensus. Piloting was performed as part of wider clinical engagement in 26 acute hospitals across England. Development and validation of such a tool requires clinimetric analysis, and this was based on classical test theory. Teams also provided feedback about the feasibility and utility of the tool., Results: Initial PICUPS design yielded a 24-item tool. In piloting, a total of 552 records were collated from 314 patients, of which 121 (38.5%) had COVID-19. No obvious floor or ceiling effects were apparent. Exploratory factor analysis provided evidence of uni-dimensionality with strong loading on the first principal component accounting for 51% of the variance and Cronbach's alpha for the full-scale score 0.95 - although a 3-factor solution accounted for a further 21%. The PICUPS was responsive to change both at full scale- and item-level. In general, positive responses were seen regarding the tool's ability to describe the patients during their clinical course, engage and flag the relevant professionals needed, and to inform what should be included in an RP., Conclusions: The PICUPS tool has robust scaling properties as a clinical measure and is potentially useful as a tool for identifying rehabilitation needs as patients step down from ICU and acute hospital care., Competing Interests: Declaration of conflicting interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: LTS is a full time NHS employee but, as part of her NHS activities, she directs the UK Rehabilitation Outcomes Collaborative (UKROC), She has a specific research interest in outcomes evaluation and, together with colleagues (including author RJS) she has published extensively on the development and use of standardised measures, and neither LTS or RJS has any personal financial interest in any of the material mentioned in this article.  Several of the authors have clinical academic posts, and research/development publications of this kind may be used by their employing NHS or University organisation to contribute to departmental returns in evaluations such as the NHS R&D reports or the Research Excellence Framework.  ZP has received honoraria for consultancy from GlaxoSmithKline, Lyric Pharmaceuticals, Faraday Pharmaceuticals and Fresenius-Kabi, and speaker fees from Orion, Baxter, Nutricia and Nestle., (© The Intensive Care Society 2021.)

Objectives: Despite successful treatment, people living with HIV experience persisting and burdensome multidimensional problems. We aimed to assess the validity, reliability and responsiveness of Positive Outcomes, a patient-reported outcome measure for use in clinical practice., Methods: In all, 1392 outpatients in five European countries self-completed Positive Outcomes, PAM-13 (patient empowerment), PROQOL-HIV (quality of life) and FRAIL (frailty) at baseline and 12 months. Analysis assessed: (a) validity (structural, convergent and divergent, discriminant); (b) reliability (internal consistency, test-retest); and (c) responsiveness., Results: An interpretable four-factor structure was identified: 'emotional wellbeing', 'interpersonal and sexual wellbeing', 'socioeconomic wellbeing' and 'physical wellbeing'. Moderate to strong convergent validity was found for three subscales of Positive Outcomes and PROQOL (ρ = -0.481 to -0.618, all p < 0.001). Divergent validity was found for total scores with weak ρ (-0.295, p < 0.001). Discriminant validity was confirmed with worse Positive Outcomes score associated with increasing odds of worse FRAIL group (4.81-fold, p < 0.001) and PAM-13 level (2.28-fold, p < 0.001). Internal consistency for total Positive Outcomes and its factors exceeded the conservative α threshold of 0.6. Test-retest reliability was established: those with stable PAM-13 and FRAIL scores also reported median Positive Outcomes change of 0. Improved PROQOL-HIV score baseline to 12 months was associated with improved Positive Outcomes score (r = -0.44, p < 0.001)., Conclusions: Positive Outcomes face and content validity was previously established, and the remaining validity, reliability and responsiveness properties are now demonstrated. The items within the brief 22-item tool are designed to be actionable by health and social care professionals to facilitate the goal of person-centred care., (© 2022 The Authors. HIV Medicine published by John Wiley & Sons Ltd on behalf of British HIV Association.)

The increasing demand for palliative care in New Zealand presents a potential threat to the quality of service delivery. One strategy to overcome this is through the implementation of valid and reliable patient-reported outcome measures. This mixed-methods study aimed to (1) implement measurement-based palliative care (MBPC) in a community palliative care service in Auckland, New Zealand; (2) evaluate the clinical utility of MBPC perceived by clinicians; (3) describe patient characteristics as measured by the Integrated Palliative Care Outcome Scale (IPOS), the Australasian Modified Karnofsky Performance Scale (AKPS), and Phase of Illness (POI); and (4) evaluate the internal consistency of the IPOS. Participants were over 18 years of age from a community outpatient palliative care service. In a phased approach to implementation, healthcare staff were educated on each instrument used for patient assessment. Uptake and internal consistency were evaluated through descriptive statistics. An interpretive descriptive methodology was used to explore the clinical utility of MBPC through semi-structured interviews with seven clinical staff members. Individual patient assessments ( n = 1507) were undertaken predominantly on admission, with decreasing frequency as patients advanced through to the terminal phase of their care. Mean total IPOS scores were 17.97 (SD = 10.39, α = 0.78). The POI showed that 65% of patients were in the stable phase, 20% were in the unstable phase, 9% were in the deteriorating phase, and 2% were in the terminal phase. Clinicians reported that MBPC facilitated holistic and comprehensive assessments, as well as the development of a common interdisciplinary language. Clinicians expressed discomfort using the psychosocial and spiritual items. Measurement-based palliative care was only partially implemented but it was valued by staff and perceived to increase the quality of service delivery. Future research should determine the optimal timing of assessments, cultural responsivity for Māori and Pacific patients, and the role of MBPC in decision support for clinicians.

Context: The growth of patient reported outcome measures data in palliative care provides an opportunity for machine learning to identify patterns in patient responses signifying different phases of illness., Objectives: The study will explore if machine learning and network analysis can identify phases in patient palliative status through symptoms reported on the Integrated Palliative Care Outcome Scale (IPOS)., Methods: A partly cross-sectional and partially longitudinal observational study was undertaken using the Australasian Karnofsky Performance Scale (AKPS); Integrated Palliative Care Outcome Scale (IPOS); Phase of Illness (POI). Patient palliative records (n = 1507, 65% stable, 20% unstable, 9% deteriorating, 2% terminal) from 804 adult patients enrolled in a New Zealand palliative care service were analysed using a combination of statistical, machine learning and network analysis techniques., Results: Data from IPOS showed considerable variation with phase. Also, network analysis showed clear associations between items by phase. Six machine learning techniques identified the most important variables for predicting possible transition between phases of illness. Network analysis for all patients showed that Poor Appetite and Loss of Energy were central IPOS items, with Loss of Energy linked to Drowsiness, Shortness of Breath and Lack of Mobility on the one hand, and Poor Appetite linked to Nausea, Vomiting, Constipation and Sore and Dry Mouth on the other., Conclusion: These preliminary results, when coupled with the latest technological developments in mobile apps and wearable technology, could point the way to increased use of digital therapeutics in continuous palliative care monitoring., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Aim: To develop and validate a questionnaire to measure health CE at governance level., Method: This study used qualitative and quantitative methods (including focus groups, cognitive interviews and an international survey), and consisted of two phases. In Phase 1, an initial list of items was generated and refined with feedback from health consumer representatives. In Phase 2, a draft survey was distributed to n=227 consumers from New Zealand, Australia and Canada. The benefit and relevance of using the questionnaire was explored through face-to-face interviews with five CE leaders from New Zealand healthcare organisations., Results: The proposed questionnaire comprises 25 statements relating to CE. Respondents indicate their level of agreement with the statements on a five-point Likert-type scale. Focus group and cognitive interview participants found the questionnaire relevant and easy to understand. The questionnaire scores correlated with the PPEET, another instrument measuring consumer engagement, and showed excellent internal consistency (Cronbach's alpha=0.97), unidimensionality and test-retest reliability (r=0.84)., Conclusion: The proposed questionnaire measures CE at governance level and can be used for international comparisons and benchmarking. It showed sound psychometric properties and its value and relevance was recognised by health consumer representatives and leaders with CE roles in New Zealand healthcare organisations., Competing Interests: Nil.

Accurate distinction between state and trait anxiety is necessary for assessment and monitoring of individual anxiety levels over time and developing effective interventions to reduce anxiety. Generalizability theory (G-theory) is a suitable method to distinguish between state and trait and to evaluate reliability of test scores and sources of measurement error in the assessment of affective conditions. We applied G-theory to the widely used 40-item State and Trait Anxiety Inventory (STAI) completed by 139 participants on three occasions separated by 2-week intervals. The results show that both subscales of the STAI demonstrated excellent reliability for test scores in measuring trait anxiety with high generalizability of scores across occasions and persons ( G = 0.84-0.92). The most dynamic aspects of state anxiety were identified in both subscales including satisfaction, nervousness, feelings of pleasure, perceived failure, calmness, feeling inadequate, and sensitivity to disappointments and this informed the development of a more sensitive state anxiety scale presented here. The STAI trait subscale and the proposed sensitive state subscale can be used to more accurately distinguish between state and trait anxiety. The most dynamic aspects of anxiety identified using G-theory are more amenable and need to be considered as the primary target of interventions aiming at reducing anxiety. More comprehensive assessment of state anxiety may benefit from the development of a longer scale informed by G-theory. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Lay Abstract: The Autism Spectrum Rating Scale is a behavioural rating scale completed by parents and teachers that is useful for identifying children with an autism spectrum disorder. The development of a modified Autism Spectrum Rating Scale suitable for use in China is important for the identification of children in China with an autism spectrum disorder. In this study, we examined the Modified Chinese Autism Spectrum Rating Scale using a statistical technique known as Rasch analysis. Rasch analysis tests whether the questionnaire meets the standards for modern scientific measurement. We used Rasch analysis to examine data from 2013 children in China including 420 diagnosed with an autism spectrum disorder who had been rated by a parent or grandparent. After removing a small number of items (questions), the Modified Chinese Autism Spectrum Rating Scale met the stringent criteria for Rasch measurement. The availability of a reliable and precise tool for assessing behaviours characteristic of an autism spectrum disorder in Chinese children will improve the identification and diagnosis of autism spectrum disorder in China, thus enabling better provision of support services.

While evidence supports the feasibility of online mindfulness training (MT), the effect of this approach on cognition remains unclear. The present study investigated changes in cognition following a newly developed 6-week videoconference-delivered MT program on cognitive function in two groups. The first group ( n = 17) had two baseline assessments prior to MT [3 weeks after group two ( n = 15)] to allow for evaluation of practice and learning effects. Four participants from each group were excluded from the final analysis due to missing data. Following MT, there was an improvement in switching of attention, working memory, executive function, and social cognition, but some of these effects were not easily accounted for by learning or practice effects. No significant changes were found on tasks measuring sustained attention, cognitive flexibility and inhibition, information processing, and sensory-motor function. Our findings suggest that domain-specific cognition might be enhanced by a brief videoconference-delivered MT, and larger, controlled studies to delineate the effects of online MT on subdomains of cognition are needed., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Wang, Taylor, Sumich, Krägeloh, Lee and Siegert.)

Purpose: The aim of this study is to evaluate the properties of the Leg Activity measure according to COnsensus-based Standards for the selection of health Measurement INstruments., Method: Participants were assessed at baseline, one day, 6 weeks and 12 weeks, following treatment for leg spasticity with botulinum toxin and physical interventions., Results: In stage 1, 64 participants were recruited to evaluate the initial psychometric properties of Leg Activity measure. In stage 2, 100 additional participants were recruited, to evaluate the scaling properties. Total sample of 164 participants was used. Construct validity was supported for "passive function", "active function" and "impact on quality of life". Cronbach's alpha was 0.86, 0.97 and 0.87 respectively for the scales. Item level test-retest agreement ranged from 91-97% (Kappa 0.75-0.95). Following treatment for spasticity ( n  = 64), the Leg Activity measure "passive function" and "impact on life" scales were responsive to change. Principal components analysis confirmed the constructs and a unidimensional Rasch Partial Credit Model was subsequently established for each scale. Transformation to an interval scale was achieved. Using the ordinal-to-interval conversion tables, parametric statistical analysis may be used., Conclusion: The study provides support for the Leg Activity measure being valid, reliable and responsive.Implications for rehabilitationThe Leg Activity measure is the only published self-report measure in the current literature that addresses passive and active function as well as impact on quality of life, of the paretic leg in a comprehensive manner.The initial evaluation of Leg Activity measure psychometric properties, in relation to the COnsensus-based Standards for the selection of health Measurement INstruments checklist and Medical Outcomes Trust Quality Criteria, supports its measurement properties for clinical and research use.The Leg Activity measure as a valid, reliable and responsive tool for the evaluation of treatment in leg spasticity including condition specific (spasticity) quality-of-life.

Background: A major problem in quantifying symptoms of schizophrenia is establishing a reliable distinction between enduring and dynamic aspects of psychopathology. This is critical for accurate diagnosis, monitoring and evaluating treatment effects in both clinical practice and trials., Materials and Methods: We applied Generalizability Theory, a robust novel method to distinguish between dynamic and stable aspects of schizophrenia symptoms in the widely used Positive and Negative Symptom Scale (PANSS) using a longitudinal measurement design. The sample included 107 patients with chronic schizophrenia assessed using the PANSS at five time points over a 24-week period during a multi-site clinical trial of N-Acetylcysteine as an add-on to maintenance medication for the treatment of chronic schizophrenia., Results: The original PANSS and its three subscales demonstrated good reliability and generalizability of scores (G = 0.77-0.93) across sample population and occasions making them suitable for assessment of psychosis risks and long-lasting change following a treatment, while subscales of the five-factor models appeared less reliable. The most enduring symptoms represented by the PANSS were poor attention, delusions, blunted affect and poor rapport. More dynamic symptoms with 40%-50% of variance explained by patient transient state including grandiosity, preoccupation, somatic concerns, guilt feeling and hallucinatory behaviour., Conclusions: Identified dynamic symptoms are more amendable to change and should be the primary target of interventions aiming at effectively treating schizophrenia. Separating out the dynamic symptoms would increase assay sensitivity in trials, reduce the signal to noise ratio and increase the potential to detect the effects of novel therapies in clinical trials., (© 2020 The Authors. European Journal of Clinical Investigation published by John Wiley & Sons Ltd on behalf of Stichting European Society for Clinical Investigation Journal Foundation.)

Objectives: Mindfulness, positive affect, and compassion may protect against psychological distress but there is lack of understanding about the ways in which these factors are linked to mental health. Network analysis is a statistical method used to investigate complex associations among constructs in a single network and is particularly suitable for this purpose. The aim of this study was to explore how mindfulness facets, affect, and compassion were linked to psychological distress using network analysis., Methods: The sample ( n = 400) included equal numbers from general and student populations who completed measures of five mindfulness facets, compassion, positive and negative affect, depression, anxiety, and stress. Network analysis was used to explore the direct associations between these variables., Results: Compassion was directly related to positive affect, which in turn was strongly and inversely related to depression and positively related to the observing and describing facets of mindfulness. The non-judgment facet of mindfulness was strongly and inversely related to negative affect, anxiety, and depression, while non-reactivity and acting with awareness were inversely associated with stress and anxiety, respectively. Strong associations were found between all distress variables., Conclusions: The present network analysis highlights the strong link between compassion and positive affect and suggests that observing and describing the world through the lens of compassion may enhance resilience to depression. Taking a non-judging and non-reacting stance toward internal experience while acting with awareness may protect against psychological distress. Applicability of these findings can be examined in experimental studies aiming to prevent distress and enhance psychological well-being., Competing Interests: Conflict of InterestThe authors declare that they have no conflict of interest., (© The Author(s) 2020.)