Purpose: This study aims to explore quality of life (QOL) during the first year of recovery after stroke in North Norway and Central Denmark. Method: Individual in-depth interviews with 11 stroke survivors were performed twelve months after stroke onset. An interpretative, inductive approach shaped the interview process and the processing of data. Results: We found that QOL reflected the individuals’ reconstruction of the embodied self, which was identified by three intertwined and negotiating processes: a familiar self, an unfamiliar self, and a recovery of self. Further, we found that reconstruction of the embodied self and QOL could be framed as an ongoing and interrelated process of “being, doing, belonging and becoming”. Enriching social relations, successful return to work, and continuity and presence in professional support during recovery enhanced the experience of QOL. Fatigue and sustained reduced function hindered participation in meaningful activities and influenced the perceived QOL negatively. Conclusions: The two countries differed 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. Reconstruction of the embodied self is a means of understanding stroke survivors’ QOL during the first year of recovery, supporting an individualized and tailored rehabilitation practice. Graphical Abstract

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...

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 < 0.001), whereas the rho was 0.35 (p < 0.05) for the ‘Vision’ domain. Hypothesis testing supported the construct validity of the scale. Standard error of measurement values for each domain were generated to indicate the required magnitudes of detectable change. 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.

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. 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. 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. The brief QOLIBRI-OS is a valid and reliable brief health-related outcome measure that is appropriate for screening HRQOL in patients after stroke.

Objective: Post-stroke fatigue may be associated with functioning even in patients with mild stroke. In order to guide rehabilitation, the aim of this study was to investigate the independent contribution of 12 function-related domains to severe long-term fatigue.Design: Observational follow-up study.Subjects: A total of 144 stroke survivors (mean age 67.3, standard deviation (SD) 10.9 years) were included.Methods: Fatigue 3–4 years post-stroke was measured with the Fatigue Severity Scale (cut-off ≥5). Independent variables were the multidimensional Stroke-Specific Quality of Life scale with 12 domains, demographics, and baseline stroke characteristics.Results: Most of the participants had mild and moderate stroke. Thirty-five percent (n = 51) reported severe fatigue 3–4 years after stroke. Those living with a significant other, and working participants reported significantly less fatigue. All domains of the Stroke-specific Quality of Life scale were significantly associated with the Fatigue Severity Scale. Adjusted for age, sex, marital status, and work status, the domains “energy”, “mood”, and, unexpectedly, the domain “vision”, were all variables independently associated with severe long-term fatigue.Conclusion: Stroke survivors with prominent self-reported visual problems were more likely to experience fatigue. This finding should be verified in further studies. Visual examination and visual rehabilitation may reduce fatigue in selected stroke survivors. LAY ABSTRACTPost-stroke fatigue presumes worse outcomes for rehabilitation and recovery after stroke. More knowledge of how specific long-term consequences relate to fatigue is needed to guide care and rehabilitation. The aim of this study is to investigate whether specific areas of function are related to fatigue 3–4 years after stroke. In total, 144 stroke survivors with predominantly initial mild and moderate stroke severity were included. Self-reported questionnaires with 12 function-related areas from a stroke-specific health-related quality of life measurement were tested in relation to a fatigue scale. This study found severe fatigue in 35% of participants. All functional areas were related to fatigue. When corrected for age, sex, and marital status the domains “energy”, “mood”, and “vision” were of particular importance for severe fatigue. The results of this study indicate that stroke survivors with prominent visual problems may especially be at risk of severe fatigue.

Objective: To explore trajectories that describe change in post-stroke health-related quality of life with fatigue as outcome. Design: Observational and prospective study. Subjects: Stroke survivors (N = 144) with predominantly mild or moderate strokes. Methods: The multidimensional Stroke-Specific Quality of Life scale was used at 1 and 4 years, and the Fatigue Severity Scale at 4 years post-stroke. Latent class growth analyses were used as person-oriented analyses to identify meaningful trajectories. Socio-demographic and stroke-related covariables provided customary adjustment of the outcome, as well as prediction of class membership. Results: The latent class growth analysis models were estimated for “physical health”, “visual-language”, and “cognitive-social-mental” components of the Stroke-Specific Quality of Life scale, which extracted trajectories describing a variation in stable, deteriorating and improving functional patterns. The stable, well-functioning trajectory was most frequent across all components. More pronounced fatigue was associated with trajectories describing worse functioning, which was more prominent among females compared with males. Living alone implied more fatigue in the “cognitive-social-mental” component. Within the “visual-language” components’ trajectories, younger and older participants reported more fatigue compared with middle-aged participants. Conclusion: Most participants belonged to the stable, well-functioning trajectories, which showed a consistently lower level of fatigue compared with the other trajectories.