Occupational performance one to five years after aneurysmal subarachnoid haemorrhage: a cohort study.

OBJECTIVE: To report on the self-perceived occupational performance of patients with aneurysmal subarachnoid haemorrhage and examine the associations between aneurysmal subarachnoid haemorrhage characteristics, socio-demographic factors and self-perceived problems. DESIGN: A single-centre cohort study design was combined with a cross-sectional analysis. SUBJECTS/PATIENTS: All patients with aneurysmal subarachnoid haemorrhage who were capable of performing activities of daily living before discharge from hospital were included. METHODS: The assessment of the patient's occupational performance followed a patient-reported outcome measure 1 to 5 years after the subarachnoid haemorrhage. Secondary outcomes comprised scores from the Glasgow Outcome Scale, modified Rankin Scale, Fisher Scale, World Federation of Neurological Societies grading system, vasospasm, and hydrocephalus. RESULTS: Of the 62 patients included in the study (66% female, mean age 55 years), 79% reported experiencing issues with occupational performance, most frequently with regard to leisure and productivity. The problems reported were significantly associated with vasospasm (p = 0.021) and the Glasgow Outcome Scale score (p = 0.045). CONCLUSION: Even patients who have had aneurysmal subarachnoid haemorrhage with a favourable outcome may encounter occupational performance difficulties for several years. It is vital to use patient-reported outcome measures to identify these issues. This research enhances our comprehension of aneurysmal subarachnoid haemorrhage patients' self-perceived occupational performance and the factors that affect their performance.

A prospective study for using cognitive decline as a predictor for survival and use of feeding/respiratory support for patients with motor neuron disease in Norway.

BACKGROUND: There is a need for knowledge regarding the medical management of motor neuron disease/amyotrophic lateral sclerosis (MND/ALS) with and without cognitive decline. It has scarcely been studied whether cognitive decline will influence the course of disease or interfere with the use of life-prolonging aids for respiration and nutrition. Cognitive decline may impact the length of illness. METHODS: Patients were prospectively recruited from an ALS outpatient clinic at Haukeland University Hospital. Participants underwent the standardized cognitive test Edinburgh Cognitive and Behavioral ALS Screen Norwegian version (ECAS-N), clinical examination, and were functionally assessed by the ALS Functioning Rating Scale-revised version (ALS-FRS-R). The time and indication for installation of a feeding tube [percutaneous endoscopic gastrostomy (PEG)] and/or respiratory aid [bilevel positive airway pressure device (BiPAP)] or invasive respirator were retrieved from the medical records. Kaplan-Meier tests were used to study the risk of death and the probability for implementing PEG and/or BiPAP in relation to time from diagnosis. The individual assessment was used for analyzing the establishment of aids in relation to point of death. RESULTS: A total of 40 patients were evaluated for the study, 31 of whom were finally included. None of the included patients did not use an invasive respirator. The patients were divided into two subgroups (normal cognition or cognitive decline, cut-off 92 points) according to their performance in the ECAS-N. The course of the disease, shown as a risk of death, was higher among the ALS/MND patients with cognitive decline compared to those with cognitive intact function throughout the study period. The cognitive status did not influence the fitting of aids. Use of aids did not influence the survival in subgroups significantly. CONCLUSIONS: The study demonstrated shorter survival for the patients with ALS/MND with cognitive decline compared to those without cognitive decline. The practice and implementation of both BiPAP and PEG did not differ among the ALS/MND patients with and without cognitive decline in Norway.

Norwegian version of the Edinburgh cognitive and behavioural ALS screen: Construct validity, internal consistency, inter-rater, and test-retest reliability.

BACKGROUND: Research collaboration highlight a need for validated tests in other languages than English. Translation and culture adjustments may threaten essential features of the original instrument. OBJECTIVE: To assess the internal consistency, inter-rater and test-retest reliability, and construct validity of the Norwegian version of the Edinburgh Cognitive and Behavioural Amyotrophic Lateral Sclerosis (ALS) Screen (ECAS-N). METHODS: Performance of 71 subjects with ALS, 85 healthy controls (HC) and 6 controls with Alzheimer's disease (AD) were assessed with the ECAS-N. Test-retest interval was four months. Internal consistency was evaluated using Cronbach's alpha; reliability was assessed using intraclass correlation coefficient (ICC), Cohen's kappa, and Bland Altman plot. Five hypothesis, including the Montreal Cognitive Assessment (MoCA) screen, was evaluated for construct validity. RESULTS: ECAS-N total score produced a Cronbach's alpha of 0.65, had excellent inter-rater reliability (ICC = 0.99) and acceptable test-retest reliability (ICC = 0.73). Construct validity analysis suggested valid use of the ECAS-N to distinguish people with ALS-specific cognitive impairment from HC (p = 0.001) and those with AD (p = 0.002). The MoCA and ECAS-N were moderately correlated (r = 0.53). CONCLUSION: The ECAS-N has potential to be used by different testers in clinical practice and research to screen patients with ALS who speak Norwegian and for documenting cognitive impairment over time.

Rheumatic disease and fatigue: Participants' experiences of an activity-pacing group.

BACKGROUND: Fatigue is a common symptom of inflammatory rheumatic disease and has a great impact on everyday life. Activity-pacing is proposed as an intervention to increase participation in meaningful activities. AIMS: To explore participants' experiences with an activity-pacing group, how participants perceived self-managing everyday life after group attendance, and their reflections on unmet needs that could enhance self-management of everyday life with fatigue. MATERIALS AND METHODS: Semi-structured interviews were conducted with 10 participants who had attended an activity-pacing group. Thematic analyses were conducted. FINDINGS: Prior to group attendance, the participants expressed an awareness of their lack of knowledge of fatigue. Through group attendance, they increased their understanding of fatigue and their ability to apply strategies to better manage everyday life. Participants found it difficult to balance their energy use and realised that implementing activity-pacing strategies takes time. Therefore, they requested follow-up sessions with the activity-pacing group. They also desire that rheumatologists pay more attention to and acknowledge fatigue. CONCLUSIONS AND SIGNIFICANCE: Enhancing the understanding of fatigue and how to manage everyday life with fatigue, appears to be important. Group interventions led by occupational therapists and with a focus on activity-pacing may be a suitable approach. Follow-up sessions are recommended.

Translation, cultural adaptation, and validation of a screening test for cognitive and behavioural changes in amyotrophic lateral sclerosis.

PURPOSE: To describe challenges of translating and culturally adapting the Edinburgh Cognitive and Behavioural Amyotrophic Lateral Sclerosis (ALS) Screen into Norwegian (ECAS-N), evaluate its content validity; provide age- and education-balanced norms for verbal fluency and cut-off values for abnormal performance. MATERIALS AND METHODS: Translation to Norwegian and back-translation to English complied with standard methods. Patients and ALS experts evaluated the relevance, comprehensiveness and comprehensibility of the translated ECAS (ECAS-N). Content validity indexes at the item level (I-CVI), scale level (S-CVI) and inter-rater agreement were calculated. Performance of controls determined norms for written and spoken verbal fluency (n = 559) and cut-off scores for abnormal performance (n = 85). RESULTS: High levels of content validity was achieved for all items of the ECAS-N, I-CVI, S-CVI and inter-rater agreement was 87.5%. Age- and education-balanced norms for written and spoken verbal fluency were produced. Cut-off scores of abnormal performance were slightly lower than the original ECAS. CONCLUSIONS: The ECAS-N holds promise for detecting cognitive and behavioural impairment in Norwegian patients with ALS. Cut-off scores are situational and could slightly vary between different cultures. The ECAS-N can be used in international research, but researchers should be aware of the differences between the tests applied in the studies.Implications for rehabilitationThe ECAS-N, a Norwegian version of the English-language ECAS was produced for clinical use in Norway.Rigorous translation methods were used, and expert-judged modifications were made for Norwegian-specific culture and language nuances.Determination of ECAS-N cut-off scores for abnormal cognition was guided by a biostatistician, are slightly lower than the original ECAS, and are based on results from an objectively calculated number of healthy Norwegians.A nuanced picture of cognitive impairment in ALS drawn from a well-developed scale as the ECAS-N can contribute to a management process better tailored to patients'- and carers' individual needs.

Psychometric Properties of Cognitive Assessment in Amyotrophic Lateral Sclerosis: A Systematic Review.

PURPOSE: We aimed to list all tests used to assess cognitive change in patients with amyotrophic lateral sclerosis (ALS) and to provide a descriptive synthesis of the psychometric properties of tests that were evaluated in a population of ALS patients. MATERIALS AND METHODS: The protocol is registered in PROSPERO (ID: CRD42017055603). We systematically search for literature in 11 databases. Full-text articles, in any language, with original research were included. All included articles were scrutinised by two independent authors. Disagreement was resolved by consensus. The framework of Lezak informed conceptualises of the tests identified. To evaluate methodological quality, we used the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN). Data were synthesised using criteria proposed by the Cochrane Back Review Group. RESULTS: Of 319 included articles, 46 articles reported information on the psychometric properties of cognitive tests used in patients with ALS. We found that the highest level of evidence was supported for the Reading the Mind in the Eye Test (RME), Addenbrooke's Cognitive Evaluation (ACE) and Frontal Assessment Battery (FAB). Moderate level of evidence was found for the screening tests; Edinburgh Cognitive and Behavioural ALS Screen (ECAS) and the Montreal Cognitive Assessment (MoCA). CONCLUSION: The screening test, ECAS and the social cognition test, RME, may have some advantages over other tests that have been used for assessing cognitive change in ALS patients. Recommendations of ALS-specific tests with sound psychometric properties are urgently needed.

Hand therapy or not following collagenase treatment for Dupuytren's contracture? Protocol for a randomised controlled trial.

BACKGROUND: Dupuytren's contracture (DC) is a fibrotic hand condition in which one or more fingers develop progressive flexion deformities. Quality of life is diminished due to disabling limitations in performing everyday activities. For DC patients treated with collagenase, referral for subsequent hand therapy is inconsistent. It is unknown whether subsequent hand therapy is beneficial compared to no therapy. The purpose of this study is to determine whether hand therapy improves DC patients' performance of and satisfaction with performing everyday activities one year after collagenase treatment. METHODS: We will conduct a randomised controlled trial with two treatment groups (hand therapy vs. control) of DC patients who have received collagenase treatment. DC patients with contracted metacarpophalangeal joint(s) (MCPJ) (hand therapy, n = 40; control, n = 40) and those with proximal interphalangeal joint(s) (PIPJ) involvement (hand therapy, n = 40; control, n = 40) comprise two subgroups, and we will study if the treatment effect will be different between both groups (n = 160). Patients with a previous injury or treatment for DC in the treatment finger are excluded. Hand therapy includes oedema and scar management, splinting, movement exercises, and practice of everyday activities. The main outcome variable is patients' performance of and satisfaction with performing everyday activities, as assessed with the Canadian Occupational Performance Measure. Secondary outcomes are DC-specific activity problems, as assessed with the Unité Rhumatologique des Affections de la Main scale, and active/passive flexion/extension of treated joints and grip force using standard measuring tools, and self-reported pain level. Demographic and clinical variables, degree of scarring, cold hypersensitivity, number of occupational sick-leave days are collected. Self-reported global impression of change will be used to assess patient satisfaction with change in hand function. Assessments are done pre-injection and 6 weeks, 4 months, and 1 year later. Standard univariate and multivariate statistical analyses will be used to evaluate group differences. DISCUSSION: This study aims to assess whether hand therapy is beneficial for activity-related, biomechanical, and clinical outcomes in DC patients after collagenase treatment. The results will provide an objective basis for determining whether hand therapy should be conducted after collagenase treatment. TRIAL REGISTRATION: This study has been registered at ClinicalTrials.gov as NCT03580213 (April 5, 2018).

Edinburgh Cognitive and Behavioral Amyotrophic Lateral Sclerosis Screen (ECAS) in Norway: Protocol for validation and a prospective cohort study.

In amyotrophic lateral sclerosis (ALS) cognitive impairment may occur. This could detrimentally influence communication between patient and health-care professionals and make clinical assessment difficult. Given the short life expectancy after diagnosis, it is crucial to accurately identify ALS patients early. Although suitable cognitive screening tools for patients with ALS are available, they have not been evaluated in a Norwegian population. Interpretation of scores for available tests and practical application of scoring is also not well established. The protocol described here involves two related studies that aim to improve the quality of ALS clinical testing instruments used in the Norwegian population. The first is a validation study that evaluates the psychometric properties of the ECAS-Norwegian. The second is a prospective cohort study that evaluates the ECAS-Norwegian as a tool to predict early changes in ability to work, drive a car and the need for advanced therapy. Study 1 is a multicenter study using international quality criteria. Patients with ALS, healthy control subjects, and control subjects with dementia will be included. Primary outcome is ECAS-Norwegian scores. In study 2, patients with ALS will be included. ECAS-Norwegian compared to Clinical Dementia Rating score and Montreal Cognitive Assessment scores will be used as a prognostic tool for working, driving, and initiating advanced life-prolonging therapy. Before clinical implementation, the ECAS-Norwegian needs to be evaluated and validated. Successful validation and implementation of the ECAS-Norwegian may provide early identification of cognitive impairment in ALS, leading to more proactive, individualized treatment.

Ability in daily activities after early supported discharge models of stroke rehabilitation.

UNLABELLED: More knowledge is needed about how different rehabilitation models in the municipality influence stroke survivors' ability in activities of daily living (ADL). OBJECTIVES: To compare three models of outpatient rehabilitation; early supported discharge (ESD) in a day unit, ESD at home and traditional treatment in the municipality (control group), regarding change in ADL ability during the first three months after stroke. METHODS: A group comparison study was designed within a randomized controlled trial. Included participants were tested with the Assessment of Motor and Process Skills (AMPS) at baseline and discharged directly home. Primary and secondary outcomes were the AMPS and the modified Rankin Scale (mRS). RESULTS AND CONCLUSIONS: Included were 154 participants (57% men, median age 73 years), and 103 participants completed the study. There were no significant group differences in pre-post changed ADL ability measured by the AMPS. To find the best rehabilitation model to improve the quality of stroke survivors' motor and process skills needs further research. Patients participating in the ESD rehabilitation models were, compared with traditional treatment, significantly associated with improved ADL ability measured by the mRS when controlling for confounding factors, indicating that patients with social needs and physical impairment after stroke may benefit from ESD rehabilitation models.

Striving for a life worth living: stroke survivors' experiences of home rehabilitation.

BACKGROUND: For mild-to-moderate stroke survivors, early supported discharge from hospital, followed by home rehabilitation is preferred over conventional care. How this mode of service contributes to recovery from stroke survivors' perspective needs further investigation. AIM: The aim of this study was to explore mild-to-moderate stroke survivors' experiences with home rehabilitation after early supported discharge from hospital. METHODS: A qualitative interpretive interview design was used in the context of a randomised controlled trial. A purposive sample of eight participants (45-80 years) was followed by an ambulant team, and a specific healthcare team provided home rehabilitation. Data were analysed using interpretive description, systematic text condensation and coping theory. FINDINGS: A crucial determinant for the participants' hopes for a life worth living was the mutual confidence expressed in encounters with healthcare professionals and the participants' ability to make sense of their now-altered body. The professional caretakers' communication qualities and their ability to attend to individual needs were important. Help in processing the emotional reactions caused by a changed body and in socialising was requested by participants. Professional caretakers providing home rehabilitation should strive for a more flexible- and individually tailored service and should seek increased cooperation among stakeholders. CONCLUSION: The focus on therapeutic communicative qualities, bodily changes, emotional processes, social concerns and long-term follow-up should be increased in order to achieve a more beneficial experience for stroke survivors.

Life changed existentially: a qualitative study of experiences at 6-8 months after mild stroke.

PURPOSE: To explore experiences of mild-stroke survivors in the context of early supported discharge. The meanings patients attributed to activities and participation in the home recovery process were our main interest. METHODS: Eight participants (45-80 years) from a randomised controlled study were selected for this sub-study. This purposive sample had received rehabilitation in their homes in the post-stroke acute phase of recovery as part of the larger study. Extensive interview data were analysed using an interpretive strategy and systematic text condensation. Coping theory was included in later stages of analysis. FINDINGS: The mild-stroke survivors' stories revealed that life had changed profoundly. Differences and similarities in experienced changes were related to: self-perceived health, the body, practical activities, taking part in society, and self-perception. The findings showed the ways in which life changed for mild-stroke survivors, experienced challenges, and survivors' thoughts about the future. CONCLUSIONS: Mild-stroke rehabilitation should focus more strongly on basic concerns related to self-perceived health, self-perception, and body, since these dimensions seem to complicate daily activities and close relationships. Professionals should also be aware of patients who experience an uncertain situation and unresolved rehabilitation needs, which still can be present 6-8 months after the stroke. IMPLICATIONS FOR REHABILITATION: When living with mild stroke, entrance to practical and social activities seemed founded on the patients' perception of the body and self as comprehensible or not. Comprehending their own changed body and sense of self seem to be a long-term process when living with mild stroke. It is suggested that long-term follow-up be incorporated in home rehabilitation service, also in the context of early supported discharge. This may contribute to help patient cope more optimally with activities and participation of importance to them.