Patient- and proxy-perceptions on functioning after stroke rehabilitation using the 12-item WHODAS 2.0: a longitudinal cohort study.

PURPOSE: To analyse longitudinally patient- and proxy-perceptions on stroke survivors'(SSs') functioning using the 12-item WHO Disability Assessment Schedule 2.0 (WHODAS) after subacute inpatient stroke rehabilitation. METHODS: Sixty-five SSs and their significant others(proxies) responded to WHODAS questionnaire at discharge and 9 to 50 months later. Self-WHODAS ratings were compared with corresponding proxy-perceptions and informal ratings on self-reported functional recovery. RESULTS: On average, SSs' functioning improved after discharge, except according to self-WHODAS ratings of those with severe stroke. Individual changes were, however, notable. Association between time and change was statistically insignificant. SSs perceived greatest improvements in walking, household tasks, community life and working ability. The only items showing slight deterioration were emotions and relationships. In parallel, proxies rated all items except emotions and relationships improved. At discharge, proxies rated SSs' functioning more impaired than SSs themselves, mostly regarding those with severe stroke. Still, inter-rater reliability was very strong and increased significantly with time (ICC 0.799 vs. 0.979 at follow-up). Ninety percent of SSs with improved functioning according to self-WHODAS reported better functioning also in the informal questionnaire. CONCLUSION: WHODAS showed improvements in SSs' functioning 9-50 months after discharge from subacute stroke rehabilitation. Improvements were in line with proxy-perception and self-reported functional recovery.IMPLICATIONS FOR REHABILITATIONStroke survivors' functioning improved significantly during the 9-50 months follow-up after subacute inpatient stroke rehabilitation.Stroke survivors perceived slightly less difficulties in their functioning compared to evaluations by proxies.Strong correlation between patient- and proxy-perceptions on stroke survivors' functioning strengthened from subacute to chronic phase of stroke recovery.The 12-item WHODAS 2.0 seems to be a valuable patient- and proxy-reported outcome measure to assess longitudinal changes in stroke survivors' functioning after stroke.

World Health Organization Disability Assessment Schedule versus Functional Independence Measure in Traumatic Brain Injury.

OBJECTIVE: In patients with traumatic brain injury, to compare functioning measured using the 12-item patient and proxy World Health Organization Disability Assessment Schedule (WHODAS-12) with assessments made by professionals. PATIENTS AND METHODS: At discharge from rehabilitation, 89 consecutive patients with traumatic brain injury (10 mild, 36 moderate, 43 severe) and their proxies completed the WHODAS-12. Professionals assessed functioning simultaneously using the WHO minimal generic set of domains of functioning and health and Functional Independence Measure (FIM). RESULTS: From mild to severe traumatic brain injury, increasing disability was found in: sum, component and item scores of patient and proxy WHODAS, except for emotional functions in patients' ratings; in sum and item scores of the WHO minimal generic data-set, except for pain; and in FIM total score and sub-scores. The WHODAS participation component was more impaired than activities. Although proxies rated functioning more impaired than patients, the correlation between patient and proxy WHODAS was strong (0.74). The correlation between patient/proxy WHODAS and FIM was also strong (-0.56 and -0.78, respectively). Proxy WHODAS differentiated mild and moderate traumatic brain injury more accurately than the other assessments. CONCLUSION: We recommend using the WHODAS-12 when planning patient- and family-oriented rehabilitation services after traumatic brain injury.

Predicting institutionalization after Subacute Stroke Rehabilitation using the 12-Item World Health Organization Disability Assessment Schedule.

OBJECTIVE: To evaluate the utility of the 12-item World Health Organization Disability Assessment Schedule (WHODAS-12) in predicting institutionalization after subacute stroke rehabilitation. DESIGN: Prospective observational study. METHODS: On a specialized rehabilitation ward, discharge WHODAS-12 scores of 156 consecutive patients (24-h National Institutes of Health Stroke Scale (NIHSS) ≥ 15) and assessment from their proxies were compared, and receiver operating characteristic curves for predicting institutionalization were generated. Clinician-rated assessments of functioning were applied for comparison. RESULTS: Thirty-three percent of the patients were unfit to respond, due to the consequences of major stroke. However, both patient and proxy WHODAS-12 sum scores differentiated the community (n = 70) and institution (n = 86) groups (p = 0.02 and p < 0.0001, respectively), the discriminative accuracy (area under the curve; AUC) being 0.63 and 0.79, respectively. In proxy assessments, the institutionalized patients were significantly more impaired in all item comparisons except for emotions and concentrating. Ability to participate differentiated the groups as accurately as activities (AUC 0.75 vs 0.78, respectively). The corresponding discriminative accuracy of the clinician-rated World Health Organization (WHO) minimal generic dataset sum score and modified Rankin Scale were 0.74 and 0.79 (p < 0.0001), respectively. CONCLUSION: Despite its brevity and subjectivity, the WHODAS-12 from proxies has shown high accuracy in predicting institutionalization after subacute rehabilitation of individuals with major stroke, the impact of participation being as relevant as that of activities.

Inpatient Rehabilitation After Acute Severe Stroke: Predictive Value of the National Institutes of Health Stroke Scale Among Other Potential Predictors for Discharge Destination.

Background: Research focusing on predictors for discharge destination after rehabilitation of inpatients recovering from severe stroke is scarce. The predictive value of rehabilitation admission NIHSS score among other potential predictors available on admission to rehabilitation has not been studied. Aim: The aim of this retrospective interventional study was to determine the predictive accuracy of 24 hours and rehabilitation admission NIHSS scores among other potential socio-demographic, clinical and functional predictors for discharge destination routinely collected on admission to rehabilitation. Material and Methods: On a university hospital specialized inpatient rehabilitation ward 156 consecutive rehabilitants with 24 hours NIHSS score ⩾15 were recruited. On admission to rehabilitation, routinely collected variables potentially associated with discharge destination (community vs institution) were analyzed using logistic regression. Results: 70 (44.9%) of rehabilitants were discharged to community, and 86 (55.1%) were discharged to institutional care. Those discharged home were younger and more often still working, had less often dysphagia/tube feeding or DNR decision in the acute phase, shorter time from stroke onset to rehabilitation admission, less severe impairment (NIHSS score, paresis, neglect) and disability (FIM score, ambulatory ability) on admission, and faster and more significant functional improvement during the in-stay than those institutionalized. Conclusion: The most influential independent predictors for community discharge on admission to rehabilitation were lower admission NIHSS score, ambulatory ability and younger age, NIHSS being the most powerful. The odds of being discharged to community decreased with 16.1% for every 1 point increase in NIHSS. The 3-factor model explained 65.7% of community discharge and 81.9% of institutional discharge, the overall predictive accuracy being 74.7%. The corresponding figures for admission NIHSS alone were 58.6%, 70.9% and 65.4%.

Comparison of functional recovery and outcome at discharge from subacute inpatient rehabilitation in patients with right or left stroke with and without contralateral spatial neglect.

OBJECTIVE: To compare to what extent the presence of contralateral spatial neglect affects functional recovery and outcome among patients with right or left stroke after subacute inpatient rehabilitation. METHODS: Observational cohort study comparing functional improvement and outcome. The same admission data-set was used as in part 1 of this study. RESULTS: Right and left stroke rehabilitants with equally mild neglect and those without neglect (a total of 4 subgroups) all improved proportionally as much, but those with neglect, irrespective of stroke side needed a longer stay in inpatient rehabilitation. At discharge, total disability did not differ significantly between the 2 neglect subgroups, but those with left stroke had significantly lower Functional Independence Measure cognitive sub-score and score in communication. Rehabilitants with neglect, irrespective of stroke side had higher motor, cognitive and total disability and were more often institutionalized than those without neglect. CONCLUSION: Mild neglect did not impair recovery after right or left stroke, but rehabilitants with neglect were more disabled and needed a longer rehabilitation inpatient stay than those without neglect.

Clinical and functional differences between right and left stroke with and without contralateral spatial neglect.

OBJECTIVE: To examine the clinical and functional characteristics associated with contralateral spatial neglect in right compared with left subacute stroke, and to investigate the correlations between neglect severity and stroke severity, functional ability and outcome. METHODS: Cross-sectional study comparing neurological impairment and disability. The same data-set was used in part 2 of this study. RESULTS: Contralateral neglect was present in 79.7% of right stroke and 68.3% of left stroke rehabilitants, and was, on average, equally mild. Left stroke rehabilitants with neglect had higher stroke severity, cognitive and total disability and dependence level and more impaired sphincter control than right stroke rehabilitants with neglect, while the occurrence of depression, motor and sensory impairment was similar. Rehabilitants with neglect, irrespective of stroke side, had higher stroke severity, cognitive, motor and total disability and dependence level than rehabilitants without neglect. CONCLUSION: In left and right stroke rehabilitants with equally mild neglect, those with left stroke had higher stroke severity, cognitive and total disability and dependence level. Neglect severity correlated with right or left stroke severity and functional ability, moderate to severe neglect correlated significantly more with functioning. Neglect severity was independently associated with functional outcome in right stroke.

The World Health Organization Disability Assessment Schedule (WHODAS 2.0) and the WHO Minimal Generic Set of Domains of Functioning and Health versus Conventional Instruments in subacute stroke.

OBJECTIVE: To compare short generic International Classification of Functioning, Disability and Health (ICF)-based measures of functioning with traditional measures of stroke severity and dependence in subacute stroke. METHODS: In this cross-sectional study patients with stroke (n = 195) and their significant others completed the 12-item World Health Organization Disability Assessment Schedule (WHODAS 2.0) at discharge from rehabilitation. A neurologist assessed functioning with the 7-item World Health Organization (WHO) Minimal Generic Set of domains of functioning and health. These scores were compared with assessments of severity of stroke (National Institutes of Health Stroke Scale; NIHSS) and dependence (modified Rankin Scale; mRS; and Functional Independence Measure; FIM). RESULTS: From mild to severe stroke, increasing disability was found in single items and sum scores of WHODAS and the WHO Minimal Generic Set. Al-though proxies rated 6 out of the 12 separate WHODAS functions more impaired than did the patients, correlations between the different measures (proxy- and patient-WHODAS, the WHO Minimal Generic Set, mRS, NIHSS and FIM total and sub-scores) were strong to very strong, except for moderate correlations between patient-WHODAS, and NIHSS or FIM cognitive sub-score. CONCLUSION: Despite their brevity, both generic ICF-based tools were useful in finding disabilities for patient- and family-centred goal-setting and service-planning after subacute rehabilitation.

Comparing functioning in spinal cord injury and in chronic spinal pain with two ICF-based instruments: WHODAS 2.0 and the WHO minimal generic data set covering functioning and health.

OBJECTIVE: To investigate whether the two briefest validated ICF-based (International Classification of Functioning, Disability and Health) tools can detect differences between different spinal conditions. DESIGN: Cross-sectional study. SETTING: University hospital rehabilitation clinic. SUBJECTS: A total of 84 patients with spinal cord injury and 81 with chronic spinal pain. MAIN MEASURES: Disability evaluated using self-reported and proxy 12-item WHODAS 2.0 ((World Health Organization Disability Assessment Schedule), and physician-rated WHO minimal generic data set covering functioning and health. FINDINGS: The two measures used showed severe disability in both patient populations, those with spinal cord injury (mean age 47.5 years, SD 13.2) and those with chronic spinal pain (mean age 47.2 years, SD 9.5), WHODAS patient sum being 18.4 (SD 9.6) versus 22.0 (SD 9.0), P < 0.05, and the WHO generic data set 15.6 (SD 4.4) versus 14.2 (SD 3.7), P < 0.01, respectively. Correlations between patient and proxy ratings and between the two disability scales were mostly strong. Severe restrictions were found in the working ability of both the populations, in mobility of patients with spinal cord injury and in pain function of patients with chronic spinal pain. In this tertiary clinic patient population, patients with spinal pain perceived more problems in emotional and cognitive functions, and in participation than patients with spinal cord injury. CONCLUSIONS: Both scales were able to find differences between two patient populations with severe disability.

Utility of the World Health Organization Disability Assessment Schedule and the World Health Organization minimal generic set of domains of functioning and health in spinal cord injury.

OBJECTIVE: To compare easy-to-use International Classification of Functioning, Disability and Health (ICF)-based measures of functioning with the level and severity of spinal cord injury. METHODS: Cross-sectional study. Patients (n = 142) and their significant others completed the 12-item World Health Organization Disability Assessment Schedule (WHODAS 2.0) questionnaire. A physician at the university hospital outpatient clinic assessed functioning with the 7-item World Health Organization (WHO) minimal generic set. RESULTS: The patient and proxy WHODAS sum score was rated severe with decreasing severity in groups with complete and partial tetraplegia and paraplegia, respectively. Working ability was rated most severely impaired in the tetraplegic groups. Between-group differences were also found in mobility, household tasks, and self-care. Mobility was found to be associated with lesion severity; life activities, participation and friendships with lesion level; and self-care and WHODAS sum score with both lesion severity and level. Depending on the level and severity of spinal cord injury, a moderate to strong correlation was found between the sum scores of the 2 tools, and mostly very strong correlations between patient and proxy assessments of functioning. CONCLUSION: Both generic ICF-based tools, despite their briefness, seemed to be useful as they were able to differentiate various levels and severities of spinal cord injury. We recommend using the 12-item WHODAS 2.0 when planning individualized services for patients with spinal cord injury.

Disability in amyotrophic lateral sclerosis compared with traumatic brain injury using the World Health Organization Disability Assessment Schedule 2.0 and the International Classification of Functioning minimal generic set.

We compared the functioning of two neurological patient groups, amyotrophic lateral sclerosis (ALS) and traumatic brain injury (TBI), using brief and validated International Classification of Functioning (ICF)-based tools. A 12-item World Health Organization Disability Assessment Schedule (WHODAS 2.0) questionnaire was mailed to ALS and TBI patients and their significant others 2 weeks before their appointment at an outpatient clinic of a university hospital. In addition, a neurologist filled in the ICF minimal generic set. Two years after diagnosis, no significant differences between the two diagnosis groups were found in overall functioning or in working ability using either patient or proxy WHODAS or physician-rated minimal generic set. In single items, however, clear differences were found. Patients and significant others rated household activities, mobility, and self-care as more impaired in the group with ALS, and learning, concentrating, and maintaining friendships in the group with TBI. There were no differences between the two diagnosis groups in the WHODAS items emotional functions, engaging in community, relating with strangers, or in working ability. Both brief ICF-based generic scales, WHODAS and the ICF generic set, could show differences between these patient groups with severe disability. The results of this study should promote assessment of disability with WHODAS 2.0 in ALS and TBI.

Comparing disability between traumatic brain injury and spinal cord injury using the 12-item WHODAS 2.0 and the WHO minimal generic data set covering functioning and health.

OBJECTIVE:: To compare disability between two patient groups using short validated tools based on International Classification of Functioning, Disability and Health (ICF). DESIGN:: Cross-sectional study. SETTING:: University hospital specialist outpatient clinic. SUBJECTS:: A total of 94 patients with traumatic brain injury and 59 with spinal cord injury. MAIN MEASURES:: Disability evaluated using self-reported and proxy 12-item WHODAS 2.0 (World Health Organization Disability Assessment Schedule), and physician-rated WHO minimal generic data set covering functioning and health. RESULTS:: The two measures used showed severe but very different disabilities in these patient groups. Disability was assessed worse by physicians in the spinal cord injury population (sum 15.8 vs. 12.7, P = 0.0001), whereas disability assessed by the patients did not differ significantly between the two groups (sum 18.4 vs. 21.2). Further analysis revealed that in patients with "high disability" (the minimal generic data set score ⩾15), self-reported functioning was more severely impaired in the traumatic brain injury group compared to the spinal cord injury group (29.7 vs. 21.4, P < 0.0001), with no difference between these two diagnostic groups in patients with "low disability" (the minimal generic data set below 15). Patients with traumatic brain injury perceived more difficulties in cognition, getting along and participation, patients with spinal cord injury in mobility and self-care. CONCLUSION:: Both generic measures were able to detect severe disability but also to detect differences between two patient populations with different underlying diagnoses.

Usability of World Health Organization Disability Assessment Schedule in chronic traumatic brain injury.

OBJECTIVES: To investigate functioning measured with the 12-item World Health Organization Disability Assessment Schedule (WHODAS 2.0) in patients with mild, moderate and severe traumatic brain injury, and to compare patients' experiences with assessments made by their significant others and by consultant neurologists. METHODS: A total of 112 consecutive patients with traumatic brain injury (29 mild, 43 moderate, 40 severe) and their significant others completed a 12-item WHODAS 2.0 survey. A neurologist assessed functioning with the International Classification of Functioning, Disability and Health minimal generic set. RESULTS: The total patient and proxy WHODAS 2.0 sum score was rated as severe, and impairments in household tasks, learning, community life, emotional functions, concentrating, dealing with strangers, maintaining friendships, and working ability as around moderate in all 3 severity groups. In standing, walking, washing, and dressing oneself the reported impairments increased from mild in mild traumatic brain injury to moderate in severe traumatic brain injury. A neurologist rated the overall functioning, working ability, and motor activities most impaired in severe traumatic brain injury, while there were no between-group differences in energy and drive functions and emotional functions. CONCLUSION: Patients with chronic traumatic brain injury perceive a diversity of significant difficulties in activities and participation irrespective of the severity of the injury. We recommend assessing disability in traumatic brain injury with the short and understandable WHODAS 2.0 scale, when planning client-oriented services.

Change in agreement between stroke survivors and their significant others on the severity of restrictions of functioning in a 1-year follow-up.

The aim of this study was to assess the agreement between stroke survivors and their significant others on the severity of restrictions of functioning and to investigate the change in this agreement in a 1-year follow-up. The 41 stroke survivors and their significant others assessed the severity of impairment at the end of in-patient interdisciplinary neurorehabilitation and 1 year later using a structured form based on International Classification of Functioning, Disability and Health (ICF). The main outcomes were as follows: (i) change in the severity score of each observer on a particular restriction (intraobserver change); (ii) change in difference in severity scores within each observer pair (interobserver change); and (iii) change in agreement between interobserver differences in severity scores during a 1-year follow-up. The significant others identified more restrictions at baseline (256 vs. 194 ICF categories, χ2 P=0.004) than the rehabilitants did. After 1 year, this difference became insignificant (218 vs. 207 ICF categories, χ2 P=0.59). The severity of perceived restrictions did not differ over time (all P>0.05). Although significant others rated the restrictions as slightly more severe than rehabilitants, the difference was not significant. The agreement between severity scores within observer pairs showed a tendency to improve during a 1-year follow-up. Statistically significant improvements in Cohen's κ agreement were found for muscle power (0.6-1.0), walking (0.7-0.9), eating (0.7-1.0) and immediate family support (0.5-0.8). The agreement between stroke survivors and their significant others on the severity of the restrictions of functioning showed a tendency to improve over time.

Concepts of capacity and performance in assessment of functioning amongst stroke survivors: A comparison of the Functional Independence Measure and the International Classification of Functioning, Disability and Health.

OBJECTIVE: To investigate the use of concepts of capacity and performance when assessing functioning of stroke survivors, measured with the Functional Independence Measure (FIM) and the International Classification of Functioning, Disability and Health (ICF). METHODS: During an inpatient interdisciplinary rehabilitation programme for 62 subacute stroke survivors, limitations in speaking, walking, toileting and eating were assessed at admission and discharge with both the FIM and a scale based on the ICF Brief Core Set for stroke. Correlation between the results obtained with these 2 scales was assessed using Spearman's correlation coefficient. RESULTS: The level of restriction of functioning, defined as capacity or performance in terms of the ICF, correlated well with the results obtained with the FIM (0.47-0.87) . The only statistically significant difference was found in assessing limitations in eating, where assessment with the FIM had a higher correlation with the concept of capacity than performance (0.75 vs 0.55). The observed correlations were not associated with stroke severity. CONCLUSION: Even though the FIM and an ICF-based scale may describe limitation of functioning of stroke survivors similarly, ICF is probably more comprehensive in describing both capacity and performance.

Differences between rehabilitation team, rehabilitants, and significant others in opinions on functioning of subacute stroke survivors: Turku ICF study.

To assess quantitative differences between rehabilitation team, rehabilitants, and significant others in opinions on functioning of subacute stroke survivors. During inpatient interdisciplinary neurorehabilitation, the interdisciplinary team, nurses, rehabilitants, and significant others reported their opinions on the functioning of consecutive 62 rehabilitants. Data were gathered using the structured form based on the International Classification of Functioning, Disability and Health (ICF) Brief Core Set for Stroke. Agreement between observers on the presence and severity of restrictions in functioning was analyzed. The strongest agreement between different observers on all studied ICF categories was achieved between the interdisciplinary team and nurses (weighted squared κ=0.7-0.9). The weakest agreement was detected between the team and rehabilitants (weighted squared κ=0.1-0.6). Support by family was found to be an important facilitating factor of functioning by all observers. Limitations in cognitive activity were identified less frequently than other restrictions. Opinions on restrictions in functioning may differ between the interdisciplinary team, rehabilitants, and significant others. These differences can be assessed quantitatively and documented using the ICF Core Set for Stroke. This potential observer-dependent discrepancy should be taken into account during the process of neurorehabilitation.

Selecting an optimal abbreviated ICF set for clinical practice among rehabilitants with subacute stroke: retrospective analysis of patient records.

To evaluate the adequacy of abbreviated versions of International Classification of Functioning, Disability and Health (ICF) (the WHO ICF Checklist and the ICF Comprehensive Core Set for Stroke) with respect to the specific clinical needs of a stroke rehabilitation unit before their implementation at a practical level. Common descriptions of functional limitations were identified from patient records of 10 subsequent subacute stroke patients referred to an inpatient multiprofessional rehabilitation unit of a university hospital. These descriptions were then converted into ICF categories, and the list was compared with the ICF Checklist of the WHO and the ICF Comprehensive and Brief Core Sets for Stroke developed by the ICF Research Branch. From the study population (50% women), 71 different, second-level ICF categories were identified, averaging 36.4 categories/patient (SD 5.8, range 28-46). Except for one category, all of the categories identified were also found in the ICF Comprehensive Core Set for Stroke. Of the categories identified, 49 (69%) were found in the WHO ICF Checklist. All except one category included in the ICF Brief Core Set for Stroke were also in our list. The Comprehensive Core Set for Stroke was found to be a good potential starting point for the practical implementation of the ICF in a stroke rehabilitation unit.