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Objectives: To examine patient-reported needs for care and rehabilitation in a cohort following different subacute pathways of rehabilitation, and to explore factors underpinning met and unmet needs. Design: Observational multicentre cohort study. Patients and methods: A total of 318 Norwegian and 155 Danish patients with first-ever stroke were included. Participants answered questions from the Norwegian Stroke Registry about perceived met, unmet or lack of need for help and training during the first 3 months post stroke. The term “training” in this context was used for all rehabilitative therapy offered by physiotherapists, occupational or speech therapists. The term “help” was used for care and support in daily activities provided by nurses or health assistants. Results: Need for training: 15% reported unmet need, 52% reported met need, and 33% reported no need. Need for help: 10% reported unmet need, 58% reported met, and 31% reported no need. Participants from both Norway and Denmark had similar patterns of unmet/met need for help or training. Unmet need for training was associated with lower functioning, (odds ratio (OR) = 0.32, p Conclusion: Similar levels of met and unmet needs for training and help at 3 months after stroke were reported despite differences in the organization of the rehabilitation services. Functioning and psychological factors were associated with unmet rehabilitation needs.

To compare stroke-specific health related quality of life in two country-regions with organisational differences in subacute rehabilitation services, and to reveal whether organisational factors or individual factors impact outcome. A prospective multicentre study with one-year follow-up of 369 first-ever stroke survivors with ischaemic or haemorrhagic stroke, recruited from stroke units in North Norway (n = 208) and Central Denmark (n = 161). The 12-domain Stroke-Specific Quality of Life scale was the primary outcome-measure. The Norwegian participants were older than the Danish (Mage= 69.8 vs. 66.7 years, respectively), had higher initial stroke severity, and longer stroke unit stays. Both cohorts reported more problems with cognitive, social, and emotional functioning compared to physical functioning. Two scale components were revealed. Between-country differences in the cognitive-social-mental component showed slightly better function in the Norwegian participants. Depression, anxiety, pre-stroke dependency, initial stroke severity, and older age were substantially associated to scale scores. Successful improvements in one-year functioning in both country-regions may result from optimising long-term rehabilitation services to address cognitive, emotional, and social functioning. Stroke-Specific Quality of Life one-year post-stroke could be explained by individual factors, such as pre-stroke dependency and mental health, rather than differences in the organisation of subacute rehabilitation services.IMPLICATIONS FOR REHABILITATIONThe stroke-specific health related quality of life (SS-QOL) assessment tool captures multidimensional effects of a stroke from the perspective of the patient, which is clinically important information for the rehabilitation services.The cognitive-social-mental component and the physical health component, indicate specific functional problems which may vary across and within countries and regions with different organisation of rehabilitation services.For persons with mild to moderate stroke, longer-term functional improvements may be better optimised if the rehabilitation services particularly address cognitive, emotional, and social functioning. The stroke-specific health related quality of life (SS-QOL) assessment tool captures multidimensional effects of a stroke from the perspective of the patient, which is clinically important information for the rehabilitation services. The cognitive-social-mental component and the physical health component, indicate specific functional problems which may vary across and within countries and regions with different organisation of rehabilitation services. For persons with mild to moderate stroke, longer-term functional improvements may be better optimised if the rehabilitation services particularly address cognitive, emotional, and social functioning.

Background:There is a paucity of stroke-specific instruments to assess health-related quality of life in the Norwegian language. The objective was to examine the validity and reliability of a Norwegian version of the 12-domain Stroke-Specific Quality of Life scale.Methods:A total of 125 stroke survivors were prospectively recruited. Questionnaires were administered at 3 months; 36 test–retests were performed at 12 months post stroke. The translation was conducted according to guidelines. The internal consistency was assessed with Cronbach’s alpha; convergent validity, with item-to-subscale correlations; and test–retest, with Spearman’s correlations. Scaling validity was explored by calculating both floor and ceiling effects. A priori hypotheses regarding the associations between the Stroke-Specific Quality of Life domain scores and scores of established measures were tested. Standard error of measurement was assessed.Results:The Norwegian version revealed no major changes in back translations. The internal consistency values of the domains were Cronbach’s alpha = 0.79–0.93. Rates of missing items were small, and the item-to-subscale correlation coefficients supported convergent validity (0.48–0.87). The observed floor effects were generally small, whereas the ceiling effects had moderate or high values (16%–63%). Test–retest reliability indicated stability in most domains, with Spearman’s rho = 0.67–0.94 (all p Conclusions:The Norwegian version of the Stroke-Specific Quality of Life scale is a reliable and valid instrument with good psychometric properties. It is suited for use in health research as well as in individual assessments of persons with stroke.

Background:Previous studies have shown reduction in quality of life after stroke, and also variations among European countries. This study aims to explore and compare quality of life and recovery-processes in a region of North-Norway and a region in Central Denmark. We specifically searched for individual, process-related and contextual factors associated with recovery and quality of life following stroke.Purpose:This qualitative study is part of the multicentre ‘NORDA-study’ describing and comparing stroke-pathways and quality of life in a region of North-Norway and Central Denmark Region, both qualitative and quantitatively.MethodsIndividual in-depth interviews with 11 stroke survivors were performed at twelve months after stroke onset. Phenomenological perspectives shaped the interview-process and the processing of data. An inductive approach through systematic text condensation was used. Theory of embodiment enlightened the perspective on quality of life and recovery and formed a basis analysing data.ResultsExploring the unfolding phenomena of quality of life one year after stroke in two regions in Norway and Denmark, we found that quality of life was closely related to the individuals’ reconstruction of the embodied self; how they made sense of the world and what they thought of themselves in relation to what they could or could not do in diverse contexts or interactions with others. We identified three intertwined and negotiating processes; a familiar self, an unfamiliar self, and recovery of self. The reconstruction of embodied self, related to different facilitators or hindrances for quality of life throughout the recovery-process. Factors as enriching social relations, successful return to work, and continuity and presence in professional support during the recovery-process influenced quality of life positively. Fatigue, sustained reduced function, hindered partaking in meaningful activities, all predisposed quality of life negatively. The variances in professional support revealed differences between Central Denmark Region and North-Norway – and how this affected recovery, quality of life and reconstruction of the embodied self.

Background and Aims: Previous studies have shown reductions in quality of life after stroke and variations between European countries. This study aims to explore and compare quality of life and recovery processes in regions of North Norway and Central Denmark Methods: We performed individual in-depth interviews with 11 stroke survivors twelve months after stroke onset. Phenomenological perspectives and an inductive approach shaped the interview process and the processing of data. Theory of embodiment enlightened the perspective on quality of life and recoveryResults: We found that quality of life was closely related to the individuals’ reconstruction of the embodied self: how they made sense of the world and what they thought of themselves. We identified three intertwined and negotiating processes: a familiar self, an unfamiliar self, and recovery of self. Factors such as enriching social relations, successful return to work, and continuity and presence in professional support during the recovery process influenced quality of life positively. Fatigue and sustained reduced function hindered participation in meaningful activities and negatively affected quality of lifeConclusions: There was a difference between the two countries in descriptions of continuity and support in the professional follow-up during the recovery process, influencing the degree of encouragement in reconstructing the embodied self – and consequently quality of life. Reconstruction of the embodied self is a way of understanding stroke survivors in the recovery process and is of clinical value in stroke rehabilitation

Background Brief measures of health-related quality of life (HRQOL) that assess both patient-reported functioning and well-being after stroke are scarce. The objective of this study was to examine reliability and validity of one of these measures, the patient-reported Quality of Life after Brain Injury–Overall Scale (QOLIBRI-OS), in patients after stroke. Methods Stroke survivors were examined prospectively using survey methods. Core survey data (n = 125) and retest data (n = 36) were obtained at 3 and 12 months, respectively. Item properties (distribution, floor and ceiling effects), psychometric properties (reliability and model fit), and validity (correlations with established measures of anxiety, depression and HRQOL) of the QOLIBRI-OS were examined. Results Missing responses on the questionnaire were low (0.5%). All items were positively skewed. No floor effects were present, whereas five out of six items showed ceiling effects. The summary QOLIBRI-OS score exhibited no floor or ceiling effects, and had excellent internal consistency (Cronbach’s α =0.93). All item-total correlations were high (0.73–0.88). The test-retest reliability of single items varied from 0.74 to 0.91 and was 0.93 for the overall score. The confirmatory factor analysis yielded an excellent fit for a five-item version and provided tentative support for the original six-item version. The convergent validity correlations were in the hypothesized directions, thus supporting the construct validity. Conclusions The brief QOLIBRI-OS is a valid and reliable brief health-related outcome measure that is appropriate for screening HRQOL in patients after stroke.