Identified needs to enhance life for people with spinal cord injury: a part of the Swedish Needs Assessment Project.

PURPOSE: To identify factors that contribute to the enhanced life of people with spinal cord injury (SCI) in Sweden. MATERIALS AND METHODS: This cross-sectional study combined workshops (n = 38) and survey data (n = 243) from people living with SCI and their relatives, health professionals, and personal care assistants working with people living with SCI. The data were first categorized using Bronfenbrenner's bioecological model, followed by a conventional content analysis. RESULTS: The factors that contribute to an enhanced life for people living with SCI are similar to those of the general population, including relationships, leisure activities, and occupation within the mesosystem. However, the unique components of the exosystem and macrosystem are specifically associated with people living with SCI. The exosystem, particularly in healthcare, plays a major role for medical reasons but also tends to obtrude and minimize the mesosystem. The macrosystem is essential, as it sets the rules that govern the actors in the other layers, creating prerequisites for meeting the needs of the mesosystem and exosystem. CONCLUSIONS: The needs that contribute to an enhanced life are multifaceted and individualized. Therefore, these systems must be flexible throughout the lifespan of individuals with SCI.

This paper reports needs that contribute to an enhanced life for people living with spinal cord injury in Sweden.The factors that contribute to an enhanced life are multifaceted and individual, and these must be considered throughout the entire life span, including getting help if secondary complications arise, aging and other life events.Individuals' willingness to take ownership is strong but requires support from the surrounding systems that can accommodate individual's unique needs.The exosystem (ea health care) plays a major role but risk to obtrude and minimize the mesosystem (individual's immediate relations).Positive attitudes toward oneself, from family members and loved ones, from health care professionals and authorities are crucial for an enhanced life.

Epidemiology of Spinal Cord Injury in Adults in Sweden, 2016-2020: A Retrospective Registry-Based Study.

STUDY DESIGN: We conducted a retrospective, descriptive register study. OBJECTIVE: The aim of the study was to present the epidemiological and demographic characteristics of the Swedish spinal cord injury (SCI) population. SETTING: Rehabilitation units in Sweden were connected to the National Quality Register for Rehabilitation Medicine (Svenskt Register för Rehabiliteringsmedicin: SveReh). The registry includes data from 26 units around the country. METHODS: Information was extracted from SveReh for patients who underwent rehabilitation for a new onset SCI between January 1, 2016, and December 31, 2020. Data regarding gender, age, aetiology, level of injury, neurogenic bowel and/or bladder dysfunction, complications during the primary rehabilitation, and the need for bi-level positive airway pressure, continuous positive airway pressure, or ventilator were analysed. RESULTS: Mean age at onset was 56 years, and men were overrepresented (66%). Tetraplegia was more common among traumatic SCI (TSCI) than non-traumatic SCI (NTSCI). The incidence was 11.9-14.8 per million for TSCI and 8.9-11.8 per million for NTSCI. At discharge, 8% of patients needed a breathing aid. Of those who were ventilator-dependent at discharge, 75% had a TSCI. Disturbed bowel and bladder functioning was noted in 58% of patients at discharge. The median time spent at the unit was 40 days, but it was approximately 2 weeks longer for those with a TSCI. CONCLUSIONS: Systematic and updated data on the Swedish SCI population show a pattern similar to Scandinavian countries with high age at onset and falls being the main cause of TSCI. The TSCI incidence was lower than in previous studies, and the results for NTSCI were novel.

Symptoms, care consumption, and healthcare costs in hospitalized patients during the first wave of the COVID-19 pandemic.

BACKGROUND: We aimed to assess symptomatology post discharge from the hospital in patients with COVID-19 treated during the first wave of the COVID-19 pandemic, and to follow care consumption and healthcare costs six months post discharge. METHODS: This study was a descriptive observational study over time. Data were retrieved from the Sahlgrenska University (SU) hospital registry for patients admitted to an SU hospital during March 2020 to August 2020. Of these, 1014 received a questionnaire approximately six weeks post discharge regarding symptoms. Data regarding care consumption were retrieved from the registry in the Region Västra Götaland for 529 (52.2%) patients who completed the questionnaire. Of these, 466 patients were included in the analysis of care consumption. RESULTS: There was a reported decrease in mobility from admission to discharge in both men (p = 0.02) and women (p = 0.01). The costs of inpatient care amounted to a total of 9 601 459.20 Euro (EUR). Symptoms were reported in 436 (93.6%) patients post discharge, of which weight loss during COVID-19 was most common in both men (n = 220, 77.5%) and women (n = 107, 58.8%). During six-month follow-up, 409 (87%) patients consumed care. Of the registered visits, 868 (27.1%) were related to a COVID-19 diagnosis. The total sum of outpatient care (i.e. visits with a registered COVID-19 diagnosis) was 77 311.30 EUR. CONCLUSIONS: At discharge from the hospital, there was a decrease in mobility. Most patients had remaining sequelae post discharge. At six months post discharge, nearly 90% of patients had consumed care, with approximately 20% related to COVID-19. This indicates a persisting need for rehabilitation post discharge from hospital in patients treated for COVID-19.

Research priorities to enhance life for people with spinal cord injury: a Swedish priority setting partnership.

STUDY DESIGN: Mixed-method consensus development project. OBJECTIVE: To identify the top ten research priorities for spinal cord injury (SCI). SETTING: Nationwide in Sweden in 2021-22. METHODS: The PSP process proposed by the James Lind Alliance was used. It comprises two main phases: question identification and priority selection. People living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included. RESULTS: In the first phase, 242 respondents provided 431 inputs addressing potentially unanswered questions. Of these, 128 were beyond the scope of this study. The remaining 303 were merged to formulate 57 questions. The literature review found one question answered, so 56 questions proceeded to the prioritisation. In the second phase, the interim prioritisation survey, 276 respondents ranked the 56 questions. The top 24 questions then proceeded to the final prioritisation workshop, at which 23 participants agreed on the top ten priorities. CONCLUSIONS: This paper reveals issues that people living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI find difficult to get answered. The top-priority questions for people living with SCI in Sweden concern specialist SCI care and rehabilitation, followed by a number of questions addressing physical health. Other topics, from the 56 key questions include Mental health, Ageing with SCI, Community support and personal care assistance, and Body functions. This result can guide researchers to design appropriate studies relevant to people with SCI. SPONSORSHIP: The project was funded by the Gothenburg Competence Centre for Spinal Cord Injury and the Swedish Association for Survivors of Accident and Injury (RTP).

Type 2 diabetes candidate genes, including PAX5, cause impaired insulin secretion in human pancreatic islets.

Type 2 diabetes (T2D) is caused by insufficient insulin secretion from pancreatic ß cells. To identify candidate genes contributing to T2D pathophysiology, we studied human pancreatic islets from approximately 300 individuals. We found 395 differentially expressed genes (DEGs) in islets from individuals with T2D, including, to our knowledge, novel (OPRD1, PAX5, TET1) and previously identified (CHL1, GLRA1, IAPP) candidates. A third of the identified expression changes in islets may predispose to diabetes, as expression of these genes associated with HbA1c in individuals not previously diagnosed with T2D. Most DEGs were expressed in human ß cells, based on single-cell RNA-Seq data. Additionally, DEGs displayed alterations in open chromatin and associated with T2D SNPs. Mouse KO strains demonstrated that the identified T2D-associated candidate genes regulate glucose homeostasis and body composition in vivo. Functional validation showed that mimicking T2D-associated changes for OPRD1, PAX5, and SLC2A2 impaired insulin secretion. Impairments in Pax5-overexpressing ß cells were due to severe mitochondrial dysfunction. Finally, we discovered PAX5 as a potential transcriptional regulator of many T2D-associated DEGs in human islets. Overall, we have identified molecular alterations in human pancreatic islets that contribute to ß cell dysfunction in T2D pathophysiology.

Predictive performance and clinical application of COV50, a urinary proteomic biomarker in early COVID-19 infection: a prospective multicentre cohort study.

BACKGROUND: The SARS-CoV-2 pandemic is a worldwide challenge. The CRIT-CoV-U pilot study generated a urinary proteomic biomarker consisting of 50 peptides (COV50), which predicted death and disease progression from SARS-CoV-2. After the interim analysis presented for the German Government, here, we aimed to analyse the full dataset to consolidate the findings and propose potential clinical applications of this biomarker. METHODS: CRIT-CoV-U was a prospective multicentre cohort study. In eight European countries (Austria, France, Germany, Greece, North Macedonia, Poland, Spain, and Sweden), 1012 adults with PCR-confirmed COVID-19 were followed up for death and progression along the 8-point WHO scale. Capillary electrophoresis coupled with mass spectrometry was used for urinary proteomic profiling. Statistical methods included logistic regression and receiver operating characteristic curve analysis with a comparison of the area under curve (AUC) between nested models. Hospitalisation costs were derived from the care facility corresponding with the Markov chain probability of reaching WHO scores ranging from 3 to 8 and flat-rate hospitalisation costs adjusted for the gross per capita domestic product of each country. FINDINGS: From June 30 to Nov 19, 2020, 228 participants were recruited, and from April 30, 2020, to April 14, 2021, 784 participants were recruited, resulting in a total of 1012 participants. The entry WHO scores were 1-3 in 445 (44%) participants, 4-5 in 529 (52%) participants, and 6 in 38 (4%) participants; and of all participants, 119 died and 271 had disease progression. The odds ratio (OR) associated with COV50 in all 1012 participants for death was 2·44 (95% CI 2·05-2·92) unadjusted and 1·67 (1·34-2·07) when adjusted for sex, age, BMI, comorbidities, and baseline WHO score; and for disease progression, the OR was 1·79 (1·60-2·01) when unadjusted and 1·63 (1·41-1·91) when adjusted (p<0·0001 for all). The predictive accuracy of the optimised COV50 thresholds was 74·4% (71·6-77·1%) for mortality (threshold 0·47) and 67·4% (64·4-70·3%) for disease progression (threshold 0·04). When adjusted for covariables and the baseline WHO score, these thresholds improved AUCs from 0·835 to 0·853 (p=0·033) for death and from 0·697 to 0·730 (p=0·0008) for progression. Of 196 participants who received ambulatory care, 194 (99%) did not reach the 0·04 threshold. The cost reductions associated with 1 day less hospitalisation per 1000 participants were million Euro (M€) 0·887 (5-95% percentile interval 0·730-1·039) in participants at a low risk (COV50 <0·04) and M€2·098 (1·839-2·365) in participants at a high risk (COV50 ≥0·04). INTERPRETATION: The urinary proteomic COV50 marker might be predictive of adverse COVID-19 outcomes. Even in people with mild-to-moderate PCR-confirmed infections (WHO scores 1-4), the 0·04 COV50 threshold justifies earlier drug treatment, thereby potentially reducing the number of days in hospital and associated costs. FUNDING: German Federal Ministry of Health.

Development of a Digital Tool for People With a Long-Term Condition Using Stroke as a Case Example: Participatory Design Approach.

BACKGROUND: In patient care, demand is growing for digital health tools to enable remote services and enhance patient involvement. People with chronic conditions often have multiple health problems, and long-term follow-up is recommended to meet their needs and enable access to appropriate support. A digital tool for previsit preparation could enhance time efficiency and guide the conversation during the visit toward the patient's priorities. OBJECTIVE: This study aims to develop a digital previsit tool and explore potential end user's perceptions, using a participatory approach with stroke as a case example. METHODS: The digital tool was developed and prototyped according to service design principles, informed by qualitative participant data and feedback from an expert panel. All features were processed in workshops with a team that included a patient partner. The resulting tool presented questions about health problems and health information. Study participants were people with stroke recruited from an outpatient clinic and patient organizations in Sweden. Development and data collection were conducted in parallel. For conceptualization, the initial prototype was based on the Post-Stroke Checklist and research. Needs and relevance were explored in focus groups, and we used a web survey and individual interviews to explore perceived utility, ease of use, and acceptance. Data were thematically analyzed following the Framework Method. RESULTS: The development process included 22 participants (9 women) with a median age of 59 (range 42-83) years and a median of 51 (range 4-228) months since stroke. Participants were satisfied or very satisfied with using the tool and recommended its use in clinical practice. Three main themes were constructed based on focus group data (n=12) and interviews (n=10). First, valuable accessible information illuminated the need for information to confirm experiences, facilitate responses, and invite engagement in their care. Amendments to the information in turn reconfigured their expectations. Second, utility and complexity in answering confirmed that the questions were relevant and comprehensible. Some participants perceived the answer options as limiting and suggested additional space for free text. Third, capturing needs and value of the tool highlighted the tool's potential to identify health problems and the importance of encouraging further dialog. The resulting digital tool, Strokehälsa [Strokehealth] version 1.0, is now incorporated into a national health platform. CONCLUSIONS: The participatory approach to tool development yielded a previsit digital tool that the study group perceived as useful. The holistic development process used here, which integrated health information, validated questions, and digital functionality, offers an example that could be applicable in the context of other long-term conditions. Beyond its potential to identify care needs, the tool offers information that confirms experiences and supports answering the questions in the tool. The tool is freely shared for adaptation in different contexts. TRIAL REGISTRATION: researchweb 236341; https://www.researchweb.org/is/vgr/project/236341.

Measuring patient experiences of person-centred care: Translation, cultural adaption and qualitative evaluation of item candidates for use in England and Sweden.

BACKGROUND: To facilitate change for person-centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person-centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person-centred care. AIM: The aim was to translate, culturally adapt and evaluate candidate items to measure person-centred care from the patient's perspective. METHODS: The Centre for person-centred care at Gothenburg university and the UK Person-centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person-centred care or questionnaire design (n = 84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews. RESULTS: From the initial pool, 155 items covering core domains and subdomains of person-centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person-centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two-ways and care is co-created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well-being and identifying goals). CONCLUSION: We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person-centred care.

Physical exercise and goal attainment after shunt surgery in idiopathic normal pressure hydrocephalus: a randomised clinical trial.

BACKGROUND: Rehabilitation in iNPH is suggested to be an important factor to improve patients' functions but there are lack of clinical trials evaluating the effect of rehabilitation interventions after shunt surgery in iNPH. The objective of this study was to evaluate the effect of a physical exercise programme and goal attainment for patients with idiopathic normal pressure hydrocephalus (iNPH) after surgery compared to a control group. METHODS: This was a dual centre randomised controlled trial with assessor blinding, intention-to-treat (ITT) and per protocol (PP) analysis. Individuals diagnosed with iNPH scheduled to undergo shunt surgery at the Linköping University Hospital in Linköping and Sahlgrenska University Hospital in Gothenburg, Sweden were consecutively eligible for inclusion. Inclusion was conducted between January 2016 and June 2018. The patients were randomised 1:1 using sequentially numbered sealed envelopes to receive either written exercise information (control group) or written information and an additional supervised high-intensity, functional exercise programme (HIFE) executed twice weekly over 12 weeks (exercise group). Preoperatively, the patients set individual goals. The primary outcome was change from baseline in the total iNPH scale score at the post-intervention follow-up. Secondary outcomes were goal attainment, and change in the separate scores of gait, balance, neuropsychology and continence and in the total score after 6 months. RESULTS: In total, 127 participants were randomised to the exercise group (n = 62) and to the control group (n = 65). In the ITT population (exercise group, n = 50; control group, n = 59), there were no between-group differences in the primary outcome, but the attrition rate in the exercise group was high. The exercise group improved more than the control group in the balance domain scores after 6 months. Post-intervention, the PP exercise population achieved their set goals to a greater extent than the controls. CONCLUSIONS: An additional effect of the 12-week HIFE-programme on the overall improvement according to the iNPH-scale after shunt surgery in iNPH was not shown. This could be due to high attrition rate. However, the long-term effect on balance and higher goal achievement indicate beneficial influences of supervised physical exercise. Trial registration clinicaltrials.gov, NCT02659111. Registered 20 January 2016, https://clinicaltrials.gov/ct2/show/NCT02659111.

Barriers to cognitive screening in acute stroke units.

Cognitive impairment is common after stroke. However, not all patients with stroke undergo cognitive screening, despite recommendations. The aim of this retrospective, explorative study was to examine the barriers to cognitive screening in acute stroke units. Data were retrieved from two Swedish Stroke registries. The outcome variable was cognitive screening during the stay at acute stroke units. Forty-three candidate explanatory variables were considered for analysis, encompassing sociodemographic factors and stroke-related outcomes during the stay at acute stroke units. The Least Absolute Shrinkage and Selection Operator and decision-tree methods were used. Of the 1120 patients (56% male, mean age: 72 years, 50% with mild stroke), 44% did not undergo cognitive screening. Walking 10 m post-stroke was the most important attribute for decisions regarding cognitive screening. The classification accuracy, sensitivity, and specificity of the model were 70% (95% CI 63-75%), 71% (63-78%), and 67% (55-77%), respectively. Patient-related parameters that influenced cognitive screening with a valid and reliable screening instrument in acute stroke units included new stroke during the hospitalisation, aphasia at admission, mobility problems, impaired verbal output skills, and planned discharge to another care facility. The barriers to cognitive screening were both patient- and organisation-related, suggesting the need for patient-tailored cognitive screening tools as well as the implementation and systematic adherence to guidelines.

Exploring the use of music as an intervention for older people living in nursing homes.

BACKGROUND: Enjoying cultural events such as musical performances is a human right as well as contributing to quality of life. However, older people who live in nursing homes are often excluded from such events. Music interventions for older people with cognitive decline have been shown to have a positive effect on their mood and behaviour, particularly in terms of anxiety, agitation and irritability. AIM: To investigate the effect of musical interventions in nursing homes from the perspective of older people, their relatives and caregivers. METHOD: Musical performances were held at 11 nursing homes in Sweden. These performances were followed by semi-structured interviews that aimed to capture the experiences of the older people, their relatives and caregivers. The interviews were analysed by qualitative thematic analysis. FINDINGS: Four relational themes were generated from the analysis: music enhances well-being for the body and soul, music evokes emotions and a 'spark of life', music adds a 'silver lining' to everyday life, and music inspires a journey of the imagination through time and space. CONCLUSION: The music concerts had a positive effect on older people, their relatives and caregivers. Providing cultural encounters in nursing homes is an important caring intervention.

Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades.

INTRODUCTION: The importance of patient-reported outcome measures (PROMs) for rheumatoid arthritis (RA) clinical studies has been recognised for many years. The current study aims to describe the RA PROMs used over the past 20 years, and their performance metrics, to underpin appropriate tool selection. METHODS: The study included a systematic search for PROMs that have been in use over the period 2000-2019, with detailed documentation of their psychometric properties, and a user-friendly presentation of the extensive evidence base. RESULTS: 125 PROMs were identified with psychometric evidence available. The domains of pain, fatigue, emotional functions, mobility, physical functioning and work dominated, with self-efficacy and coping as personal factors. Domains such as stiffness and sleep were poorly served. The most frequently used PROMs included the Health Assessment Questionnaire Disability Index (HAQ), the Short Form 36 (SF-36), the EuroQoL and the Modified HAQ which, between them, appeared in more than 3500 papers. Strong psychometric evidence was found for the HAQ, and the SF-36 Physical Functioning and Vitality (fatigue) domains. Otherwise, all domains except stiffness, sleep, education and health utility, had at least one PROM with moderate level of psychometric evidence. CONCLUSION: There is a broad range of PROMs for measuring RA outcomes, but the quality of psychometric evidence varies widely. This work identifies gaps in key RA domains according to the biopsychosocial model.

A urinary peptidomic profile predicts outcome in SARS-CoV-2-infected patients.

BACKGROUND: COVID-19 prediction models based on clinical characteristics, routine biochemistry and imaging, have been developed, but little is known on proteomic markers reflecting the molecular pathophysiology of disease progression. METHODS: The multicentre (six European study sites) Prospective Validation of a Proteomic Urine Test for Early and Accurate Prognosis of Critical Course Complications in Patients with SARS-CoV-2 Infection Study (Crit-COV-U) is recruiting consecutive patients (≥ 18 years) with PCR-confirmed SARS-CoV-2 infection. A urinary proteomic biomarker (COV50) developed by capillary-electrophoresis-mass spectrometry (CE-MS) technology, comprising 50 sequenced peptides and identifying the parental proteins, was evaluated in 228 patients (derivation cohort) with replication in 99 patients (validation cohort). Death and progression along the World Health Organization (WHO) Clinical Progression Scale were assessed up to 21 days after the initial PCR test. Statistical methods included logistic regression, receiver operating curve (ROC) analysis and comparison of the area under the curve (AUC). FINDINGS: In the derivation cohort, 23 patients died, and 48 developed worse WHO scores. The odds ratios (OR) for death per 1 standard deviation (SD) increment in COV50 were 3·52 (95% CI, 2·02-6·13, p <0·0001) unadjusted and 2·73 (1·25-5·95, p = 0·012) adjusted for sex, age, baseline WHO score, body mass index (BMI) and comorbidities. For WHO scale progression, the corresponding OR were 2·63 (1·80-3·85, p<0·0001) and 3·38 (1·85-6·17, p<0·0001), respectively. The area under the curve (AUC) for COV50 as a continuously distributed variable was 0·80 (0·72-0·88) for mortality and 0·74 (0·66-0·81) for worsening WHO score. The optimised COV50 thresholds for mortality and worsening WHO score were 0·47 and 0·04 with sensitivity/specificity of 87·0 (74·6%) and 77·1 (63·9%), respectively. On top of covariates, COV50 improved the AUC, albeit borderline for death, from 0·78 to 0·82 (p = 0·11) and 0·84 (p = 0·052) for mortality and from 0·68 to 0·78 (p = 0·0097) and 0·75 (p = 0·021) for worsening WHO score. The validation cohort findings were confirmatory. INTERPRETATION: This first CRIT-COV-U report proves the concept that urinary proteomic profiling generates biomarkers indicating adverse COVID-19 outcomes, even at an early disease stage, including WHO stages 1-3. These findings need to be consolidated in an upcoming final dataset. FUNDING: The German Federal Ministry of Health funded the study.

Respiratory complications during initial rehabilitation and survival following spinal cord injury in Sweden: a retrospective study.

STUDY DESIGN: Retrospective study. OBJECTIVES: To determine prevalence of respiratory complications in individuals with spinal cord injury (SCI) during the initial rehabilitation at the spinal cord injury unit (SCU) and to describe the subsequent effect on mortality. SETTING: The SCU at the university hospital in Gothenburg, Sweden. METHODS: We reviewed the medical charts of newly injured persons with SCI who were admitted to the SCU between 1/1/2010 and 12/31/2014. Outcome measures were time to death, length of stay, occurrence of respiratory complications, and the use of breathing aids. RESULTS: A total of 136 consecutive individuals were included; 53% with cervical SCI and 20% with lower SCI suffered from one or several respiratory complications during their initial rehabilitation in the SCU. At follow-up, 10/1/2018, 20% of the individuals were deceased. The most common cause of death was related to respiratory insufficiency. The individuals with respiratory complications during the initial rehabilitation in the SCU had particularly shortened survival compared with those without. The relative risk (RR) of dying if the person suffered from any respiratory complications during their initial rehabilitation in the SCU was 2.1 times higher than for those with no respiratory complications (RR, 2.1; 95% CI, 1.1-3.9). CONCLUSIONS: Having respiratory complications at the SCU provides preliminary data to support the claim that respiratory complications predict premature mortality. Early diagnosis and prophylactic measures seem to be necessary to mitigate the adverse consequences of serious respiratory problems.

Longitudinal changes of self-perceived manual ability the first year after stroke: a cohort study.

BACKGROUND: Recovery patterns of motor function and activity capacity of the upper extremity after stroke have been described, but less is known about longitudinal changes of perceived manual activity performance. The aim of this study was to investigate longitudinal changes of self-perceived manual ability at several timepoints from onset until 12 months post-stroke in a cohort of consecutively recruited individuals with mild, moderate and severe stroke. METHODS: The study included 106 participants from a non-selected cohort with first-ever mild, moderate or severe stroke and impaired upper extremity function (Stroke Arm Longitudinal Study at the University of Gothenburg, SALGOT). Self-perceived manual ability was assessed with the ABILHAND Questionnaire at 3 and 10 days, 4 weeks, 3, 6 and 12 months after stroke. Longitudinal change was assessed by linear mixed models (fixed and random effects) and adjusted models were built by adding effects of cofactors age, gender, stroke severity, living condition and affected hand. RESULTS: Self-perceived manual ability increased over time the first year after stroke for the total group and the subgroups. The final adjusted model for the total group included fix-effects of time (expected mean change 0.24 logits per month) adjusted by age (- 0.06 per year) and stroke severity (- 0.19 per NIHSS-score). In addition to significant effect of time, the adjusted models for moderate stroke subgroup included fixed effect of age, and for mild and severe subgroups there was an interaction effect between time and age. Further analyses between time-points showed that no significant change of self-perceived manual ability was detected beyond 3 months post-stroke. CONCLUSIONS: Self-perceived manual ability increased over time the first year after stroke, and this change was to some degree modulated by age and stroke severity at onset. Most of the improvements occurred early, predominantly within the first three months after stroke.

Relationship between self-reported and objectively measured manual ability varies during the first year post-stroke.

Self-reported outcomes provide unique insights about an individual's perceived manual ability after stroke. This study aimed at determining how the relationship between objective kinematic variables obtained from the target-to-target pointing task and self-reported manual ability varies during the first year in individuals after stroke. Sixty-six individuals from the Stroke Arm Longitudinal study at the University of Gothenburg (SALGOT) cohort were assessed using ABILHAND questionnaire and kinematic analysis at five timepoints between the 10th day and 12th month after stroke. Kinematic analysis was performed using a target-to-target pointing task in a virtual environment. Spearman's correlation was used to determine the extent of correlation between ABILHAND logits and kinematic variables. The correlations varied with time within the first year after stroke. The correlations were low or very low early after stroke and became moderate to high after 6 months for objective measures of movement time and smoothness, but remained low to moderate for mean velocity and low for peak velocity. Due to this discrepancy between self-perceived and objective assessments of arm function, a combination of self-reported and objective assessments of upper limb should be used as outcome measures, especially in the acute and subacute stages after stroke.

Development and Construct Validity of the Work Instability Scale for People With Common Mental Disorders in a Sample of Depressed and Anxious Workers: A Rasch Analysis.

BACKGROUND: Sick leave due to common mental disorders, encompassing depression and anxiety disorders, is high. Capturing early signs of reduced function could aid adjustments of work tasks and environment and, thus, endorse a pro-active approach to occupational and health care interventions to prevent long-term sick-leave spells. However, few measurements exist to identify early signs of imbalance, and none that is illness-specific. The aim of this study was to develop a work instability scale for people with common mental disorders and to test the fundamental psychometric properties of the scale. METHODS: Participants were working adults 18-65 years old with depression or anxiety. The scale development started with qualitative interviews (n = 27) which informed the drafting of a dichotomous, self-report questionnaire. Cognitive debriefing (n = 12) was used to check face validity and modify the draft. Internal construct validity of the draft was tested using Rasch analysis (n = 128). The work ability index was used as a comparator measure. RESULTS: The initial 63-item draft showed poor fit to Rasch model expectations. Items displaying poor fit or local response dependency were stepwise removed, resulting in a unidimensional 34-item scale fitting the model expectations, and with no differential item functioning. Person-item threshold distribution showed that the scale is better suited to measure low to moderate work instability, than to measure high instability. Correlations between the newly developed scale and the work ability index showed a significant, moderately strong correlation. CONCLUSIONS: In the initial target sample, the 34-item scale showed acceptable fundamental properties and internal construct validity. Further validation of the scale in a larger sample, including tests for external validity, is warranted.

Chiari I malformation-neuropsychological functions and quality of life.

OBJECTIVE: To assess the neuropsychological (NP) functioning and quality of life (QOL) before and 3 months after surgery on adults with Chiari I malformation (CMI). PATIENTS AND METHODS: All adult patients who had been diagnosed with CMI were invited to participate. Those who participated were assessed using a Hospital Anxiety and Depression scale (HAD) and NP examinations. Their QOL was assessed using the self-reported life satisfaction checklist, LiSat-11 and the five-dimensional EuroQol measurement of health outcome, EQ-5D-5L. All assessments were carried out both before and 3 months after surgery was performed. Demographic data and comorbidities were also registered. RESULTS: Of the 11 patients who underwent NP assessment, the majority demonstrated cognitive functioning within the normal range. However, postoperatively, their performance in verbal learning, psychomotor speed, colour naming speed and the ability to manage interference through response selection and inhibition (aspects of executive functioning) was significantly improved. Thirteen patients completed QOL assessments. When LiSat-11 item domains were compared with those of healthy subjects, patients reported a lower level of satisfaction with their life quality both before and after surgery. However, the EQ-5D-5L measurements, i.e., the descriptive system and the visual analogue, indicated that their QOL of life was significantly improved after surgery. CONCLUSION: There is scarcely any literature documenting effects of surgery on the QOL of CMI patients. The study we present here breaks new ground by comparing pre- and postoperative NP functions in CMI. We also examine the value of surgery for improving both NP functions and QOL in CMI.

Which clinical and sociodemographic determinants are associated with self-perceived manual ability at one year after stroke?

Purpose: To evaluate the impact of multiple potential sociodemographic and clinical stroke-related determinants on self-perceived manual ability in an unselected sample of individuals 12 months after first-ever stroke.Methods: A cross-sectional sample of 68 participants (mean age 66) with UE impairments were followed up at 12 months post stroke. Stroke severity at onset was moderate for the majority. Manual ability was assessed by the patient-reported outcome measure ABILHAND Questionnaire. Determinants included in the multivariate regression analysis were age, gender, living situation, vocational situation, affected hand, stroke severity at onset and UE disability (motor function, sensory function, joint motion, pain, grip strength, spasticity and activity capacity) at 12 months post stroke.Results: The strongest associated determinants with self-perceived manual ability were UE motor function and UE activity capacity at 12 months post-stroke. UE motor function together with age and grip strength explained 65% of the variance in one final multivariate model. UE activity capacity and grip strength explained 62% of the variance in a second final model.Conclusion: In order to understand self-perceived difficulties in manual ability in daily activities in persons with stroke, assessments of UE motor function and activity capacity are recommended.Implications for rehabilitationThe ultimate goal of the upper extremity rehabilitation after stroke is to regain ability to use the UE in daily activities that are important to the individual in his or her own environment.This requires a good understanding of factors that are associated with self-perceived manual ability in order to tailor effective rehabilitation interventions.Upper extremity motor function and activity capacity are the strongest determinants associated with self-perceived manual ability one year after stroke.These factors are recommended to be included in the assessment battery in stroke to fully understand the disability in daily life.

Gothenburg Very Early Supported Discharge study (GOTVED): a randomised controlled trial investigating anxiety and overall disability in the first year after stroke.

BACKGROUND AND PURPOSE: Early supported discharge (ESD) has been shown to be efficient and safe as part of the stroke care pathway. The best results have been seen with a multidisciplinary team and after mild to moderate stroke. However, how very early supported discharge (VESD) works has not been studied. The aim of this study was to investigate whether VESD for stroke patients in need of ongoing individualized rehabilitation affects the level of anxiety and overall disability for the patient compared with ordinary discharge routine. METHODS: A randomized controlled trial was performed with intention to treat analyses comparing VESD and ordinary discharge from hospital. All patients admitted at the stroke care unit at Sahlgrenska University Hospital of Gothenburg between August 2011 and April 2016 were screened. Inclusion occurred on day 4 using a block randomization of 20 and with a blinded assessor. Assessments were made 5 days post-stroke and 3 and 12 months post-stroke. Patients in the VESD group underwent continued rehabilitation in their homes with a multidisciplinary team from the stroke care unit for a maximum of 1 month. The patients in the control group had support as usual after discharge when needed such as home care service and outpatient rehabilitation. The primary outcome was anxiety as assessed by the Hospital Anxiety and Depression Scale-Anxiety subscale (HADS-A). The secondary outcome was the patients' degree of overall disability, measured by the modified Rankin Scale (mRS). RESULTS: No significant differences were found between the groups regarding anxiety at three or 12 months post-stroke (p = 0.811). The overall disability was significantly lower in the VESD group 3 months post-stroke (p = 0.004), compared to the control group. However, there was no significant difference between the groups 1 year post-stroke. CONCLUSIONS: The VESD does not affects the level of anxiety compared to ordinary rehabilitation. The VESD leads to a faster improvement of overall disability compared to ordinary rehabilitation. We suggest considering coordinated VESD for patients with mild to moderate stroke in addition to ordinary rehabilitation as part of the service from a stroke unit. TRIAL REGISTRATION: Clinical Trials.gov: NCT01622205. Registered 19 June 2012 (retrospectively registered).