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).

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.

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.

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.

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).

Very Early MoCA Can Predict Functional Dependence at 3 Months After Stroke: A Longitudinal, Cohort Study.

Introduction: After a stroke, cognitive impairment is commonly associated with poor functional outcomes. The primary aim of this study was to investigate if cognitive function, assessed with the Montreal Cognitive Assessment (MoCA) 36-48 h after stroke, could predict functional dependence 3 months later. The secondary aim was to identify an optimal threshold for the MoCA score that could predict functional dependence. Materials and Methods: This was a longitudinal cohort study. The research database from a stroke unit at the Sahlgrenska University Hospital was linked with the Swedish Stroke Register-Riksstroke. Cognitive function and activities of daily living (ADL) were assessed with the MoCA and the Barthel Index (BI), respectively, 36-48 h after stroke. Functional outcome 3 months after stroke was studied with the modified Rankin Scale. The predictive characteristics of the MoCA were investigated using logistic regression analyses. Receiver operating characteristic curves (AUC) were used for identifying the optimal cutoff score on the MoCA for predicting functional dependence. The MoCA score that had equal sensitivity and specificity was chosen as the optimal score for predicting functional dependence. Results: A total of 305 participants were included in the study (mean age: 68.8 years, n = 179 men). The MoCA quartiles were a significant predictor of functional dependence 3 months after stroke as an individual variable (p < 0.001, AUC = 0.72) and when adjusted for covariates such as age at stroke onset, living arrangement prior to stroke, and ADL measured with BI within 36-48 h after stroke (p = 0.01, AUC = 0.84). The MoCA score of ≤23 for impaired cognition had equal sensitivity and specificity for predicting functional dependence 3 months after stroke. Discussion and Conclusion: Cognitive function assessed with the MoCA within 36-48 h after stroke could predict functional dependence 3 months later. The participants with MoCA scores ≤23 for impaired cognition were more likely to be functionally dependent.

Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study.

PURPOSE: The aim of this study was to explore the experiences, needs, and preferences regarding follow-up perceived by people with stroke and healthcare professionals. METHODS: This is a qualitative exploratory study using focus groups. Patients and healthcare professionals, participating in a clinical visit in primary care or specialised care, were purposively sampled. Data were analysed using a framework of analysis developed by Krueger. RESULTS: Focus groups were conducted with two patient groups (n = 10, range 45-78 years) and two multidisciplinary healthcare professional groups (n = 8, range 35-55 years). The overarching theme elucidates stroke as a long-term condition requiring complex follow-up. Three organisational themes and six subthemes were identified. People with stroke discovered feelings and changes after returning home. In daily life, problems and feelings of abandonment became evident. Participants expressed experiences of unequal access to health care services. Barriers for accessing appropriate treatment and support included difficulties in communicating one's needs and lack of coherent follow-up. Follow-up activities were well functioning in certain clinics but did not provide continuity over the long term. Participants made suggestions for a comprehensive, planned, and tailored follow-up to meet patient needs. CONCLUSION: Comprehensive long-term follow-up that is accessible to all patients is essential for equal support. Our findings raised awareness about problems discovered after returning home and the obstacles individuals face in communicating their needs. Structured follow-up, which is individually tailored, can empower patients.

Experiences using the poststroke checklist in Sweden with a focus on feasibility and relevance: a mixed-method design.

OBJECTIVE: The wide range of outcomes after stroke emphasises the need for comprehensive long-term follow-up. The aim was to evaluate how people with stroke and health professionals (HPs) perceive the use of the poststroke checklist (PSC), with a focus on feasibility and relevance. DESIGN: An exploratory design with a mix of qualitative and quantitative methods. SETTING: Outpatient care at a university hospital and primary care centres in western Sweden. PARTICIPANTS: Forty-six consecutive patients (median age, 70; range, 41-85; 13 women) and 10 health professionals (median age 46; range, 35-63; 7 women). RESULTS: Most patients (87%) had one or more problems identified by the PSC. The most common problem areas were life after stroke (61%), cognition (56%), mood (41%) and activities of daily living (39%). Three organisational themes emerged from the focus group discussions. The perception of the content and relevance of the PSC was that common poststroke problems were covered but that unmet needs still could be missed. Identifying needs was facilitated when using the PSC as a tool for dialogue. The dialogue between the patient and HP as well as HPs stroke expertise was perceived as important. The PSC was seen as a systematic routine and a base for egalitarian follow-up, but participants stressed consideration given to each individual. Addressing identified needs and meeting patient expectations were described as challenging given available healthcare services. CONCLUSIONS: The PSC is a feasible and relevant tool to support egalitarian follow-up and identify patients who could benefit from targeted poststroke interventions. Stroke expertise, room for dialogue and caring for identified needs emerged as important issues to consider when using the PSC. Nutrition, sexuality and fatigue were areas mentioned that might need to be addressed within the discussions. The PSC can facilitate patients in expressing their needs, enhancing their ability to participate in decision-making.

Validation of Fatigue Impact Scale with various item sets - a Rasch analysis.

PURPOSE: Fatigue is a symptom in patients with chronic gastrointestinal (GI) and liver diseases. Different instruments have been developed to assess the severity of fatigue and the 40-item Fatigue Impact Scale (FIS) is among the most widely used. Shorter versions of FIS include the 21-item Modified Fatigue Impact Scale (MFIS), and an eight-item version for everyday use. The study aimed to assess construct validity, reliability, and sufficiency of the raw score of the original FIS with 40 items, and examine the sufficiency of the 21 items from the Modified scale and the eight items of the Daily Fatigue Impact Scale (D-FIS), all of which are embedded in the 40-item scale. METHODS: Patients with chronic GI or liver disease (n = 354) completed the FIS with 40 items. The majority (57%) was under the age of 55 years and approximately half were females (48%). Various item sets of FIS were derived which showed fit to the Rasch model. RESULTS: Local dependency and multidimensionality in FIS and the 21-item Modified scale were resolved with a testlet solution but the D-FIS showed local dependency and multidimensionality and differential item functioning (DIF) still remained. Two new item sets fulfilling unidimensionality and no DIF are suggested, one with 15 items and a six-item scale for daily use. The transformation table shows score-interval scale estimates for all these item sets. CONCLUSIONS: Both the FIS and the Modified scale can be used to measure fatigue albeit requiring some adjustment for DIF. The eight-item D-FIS is more problematic, and its summed score is not valid. Alternative 15- and 6-item versions presented in this paper can offer valid summed scores, and the transformation table allows transformation of raw scores and comparisons across all versions. Implications for rehabilitation The Fatigue Impact Scale and the Modified Fatigue Impact Scale can be used to measure fatigue after adjustments for differential item functioning. Alternative 15- and 6-item versions of Fatigue Impact Scale offer valid summed scores. The summed score for the Daily Fatigue Impact Scale is not valid. A transformation table with raw scores and Rasch transformed interval scale metric makes it possible to compare scores derived from the Fatigue Impact Scale, the Modified Fatigue Impact Scale and the proposed 15- and 6-item versions of Fatigue Impact Scale for research and/or clinical use.

Examination of the relevance of the ICF cores set for stroke by comparing with the Stroke Impact Scale.

PURPOSE: To examine if the International Classification of Functioning (ICF) core set for stoke contains problems that are relevant for the persons living with stroke as expressed in the Stroke Impact Scale (SIS). METHODS: Cross-sectional study of 242 persons with previous stroke. The agreement between the perceived problems in the SIS items and problems in the categories of Comprehensive ICF Core Set for stroke were analyzed using percent of agreement and Kappa statistic. RESULTS: The analyses between 57 items of the SIS and 31 second-level categories of the ICF were conducted. The problems in domains of "Mobility", "Activities of daily living", "Hand function", "Strength" in the SIS had moderate agreement when compared to ICF categories. The SIS domains of "Emotion" and "Communication", as well as some aspects of the "Memory" had slight or fair agreement with corresponding ICF categories. The results of the study suggest that there is acceptable agreement between persons after stroke and health professionals in the physical aspects, but rather poor agreement in the cognitive and emotional aspects of functioning. CONCLUSIONS: Health professionals do not fully capture the magnitude of emotional or social problems experienced by persons after stroke when using the ICF Core Set as a framework for evaluation. Implications for Rehabilitation The ICF Core Set for Stroke provides comprehensive list of possible health and health related outcomes for persons after stroke. Problems reported in condition-specific patient-reported outcome scales can be important in decision making in rehabilitation. Patients and health professionals tend to agree more on physical than cognitive problems. Examination of the relevance of the ICF cores set for stroke by comparing with the Stroke Impact Scale.

Feasibility of Cognitive Functions Screened With the Montreal Cognitive Assessment in Determining ADL Dependence Early After Stroke.

Objective: To investigate the feasibility of assessing cognitive function using the Montreal Cognitive Assessment (MoCA) given 36-48 h post stroke to explain dependence in activities of daily living (ADL). Methods: This is a cross-sectional, exploratory study. Cognitive function and basic ADL were assessed with the MoCA and the Barthel Index (BI), respectively, within 36-48 h of admission. Neurological functions were assessed with the National Institute of Health Stroke Scale (NIHSS) upon admittance to the hospital. Binary logistic regression analyses were performed to assess the feasibility of the MoCA in explaining ADL dependence. Results: Data were available for 550 patients (42% females, mean age 69 years). Moderate correlations (rs > +0.30, p < 0.001) were found between the total score on the BI, MoCA, and visuospatial/executive functions. The regression analysis model including only MoCA as an independent variable had a high sensitivity for explaining ADL dependence. However, the model with independent variables of MoCA, NIHSS, and age had the best area under the curve value (0.74). Conclusions: Cognitive functions assessed with the MoCA partly explain ADL dependence 36-48 h post stroke. Stroke-related neurological deficits and age should be additional considerations.

Self-reported activity of Swedish persons with haemophilia: Change over 2.5 years.

OBJECTIVES: To describe self-reported activity using the Haemophilia Activity List (HAL) for Swedish adults with haemophilia and to detect any changes over time. METHOD: The HAL was sent to the adult population with haemophilia A and B, moderate and severe form, living in Sweden (n = 260). Participants completed the HAL and a questionnaire on sociodemographic and medical information. From a previous study cohort, 61 persons had responded twice to the HAL. The investigated group was divided into early and later treatment onset groups with regard to access to medication. RESULTS: The response rate was 50%. There was a significant difference (p < 0.001) between the early and later treatment groups in all domains in HAL. When analysing HAL "question by question" from the 2 reported time-points, the most prominent outcome was that the reported ability in activities was stable over time at the group level, except for participants who had no access to the clotting factor early in life. They reported greater limitations in some of the activities in the challenging domain "leisure activities and sport". CONCLUSION: The early treatment group reported a significantly better ability in all activities compared with the late treatment group.