Change characteristics of health-related quality of life and its association with post-stroke fatigue at four-year follow-up.

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.

Visual Problems are Associated with Long-Term Fatigue 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.

Factors associated with met and unmet rehabilitation needs after stroke: A multicentre cohort study in Denmark and Norway.

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 provided by health professionals. 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 < 0.05) and more anxiety (OR = 0.36, p < 0.05). Patients reporting unmet needs for help more often lived alone (OR = 0.40, p < 0.05) and were more often depressed (OR = 0.31, p < 0.05). 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.

Stroke-Specific Quality of Life one-year post-stroke in two Scandinavian country-regions with different organisation of rehabilitation services: a prospective study.

PURPOSE: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Post-stroke health-related quality of life at 3 and 12 months and predictors of change in a Danish and Arctic Norwegian Region.

OBJECTIVES: To investigate changes in health-related quality of life between 3- and 12-months post-stroke in a north Norwegian and a Danish region that organize their rehabilitation services differently, and to identify clinically relevant predictors of change. DESIGN: Prospective multicentre cohort study. SUBJECTS: In total, 304 patients with first-ever stroke (male sex 59%, mean age 68.7 years) participated from Norway (n = 170) and Denmark (n = 134). METHODS: The Quality of Life after Brain Injury-Overall Scale (QOLIBRI-OS) was administered twice to measure change in satisfaction with function and wellbeing. RESULTS: QOLIBRI-OS scores showed a small statistically significant difference in favour of Norway at 12 months post-stroke (p = 0.02; Cohen's d = 0.26). Using a calculated minimal clinically important difference score of 12, 20% reported worse, 54% unchanged and 26% better QOLIBRI-OS scores between 3 and 12 months. Age below 65 years predicted a negative change (odds ratio (OR) 0.4, p = 0.007). CONCLUSION: In this population with mild and moderate stroke, QOLIBRI-OS scores were slightly higher in the Norwegian region. Approximately 50% of participants experienced clinically important changes in satisfaction with functioning and wellbeing between 3 and 12 months post-stroke. Younger age predicted negative change. This result could indicate increased rehabilitation needs over time in young patients and should be investigated further.

Can the health related quality of life measure QOLIBRI- overall scale (OS) be of use after stroke? A validation study.

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.

Validity, reliability and Norwegian adaptation of the Stroke-Specific Quality of Life (SS-QOL) scale.

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.