Development of an ICF Core Set for adults with cerebral palsy: capturing their perspective on functioning.

AIM: To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. METHOD: We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. RESULTS: In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I-IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III-V) participated. We identified 132 unique second-level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. INTERPRETATION: Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper adds Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP). Adults with CP perceive environmental factors as essential elements for everyday functioning. Adults with intellectual disability should be considered as a group with specific problems.

Caregiver-mediated exercises with e-health support for early supported discharge after stroke (CARE4STROKE): A randomized controlled trial.

BACKGROUND AND PURPOSE: We designed an 8-week caregiver-mediated exercise program with e-health support after stroke (CARE4STROKE) in addition to usual care with the aim to improve functional outcome and to facilitate early supported discharge by increasing the intensity of task specific training. METHODS: An observer-blinded randomized controlled trial in which 66 stroke patient-caregiver couples were included during inpatient rehabilitation. Patients allocated to the CARE4STROKE program trained an additional amount of 150 minutes a week with a caregiver and were compared to a control group that received usual care alone. Primary outcomes: self-reported mobility domain of the Stroke Impact Scale 3.0 (SIS) and length of stay (LOS). Secondary outcomes: motor impairment, strength, walking ability, balance, mobility and (Extended) Activities of Daily Living of patients, caregiver strain of caregivers, and mood, self-efficacy, fatigue and quality of life of both patients and caregivers. Outcomes were assessed at baseline, 8 and 12 weeks after randomization. RESULTS: No significant between-group differences were found regarding SIS-mobility after 8 (ß 6.21, SD 5.16; P = 0.229) and 12 weeks (ß 0.14, SD 2.87; P = 0.961), and LOS (P = 0.818). Significant effects in favor of the intervention group were found for patient's anxiety (ß 2.01, SD 0.88; P = 0.023) and caregiver's depression (ß 2.33, SD 0.77; P = 0.003) post intervention. Decreased anxiety in patients remained significant at the 12-week follow-up (ß 1.01, SD 0.40; P = 0.009). CONCLUSIONS: This proof-of concept trial did not find significant effects on both primary outcomes mobility and LOS as well as the secondary functional outcomes. Treatment contrast in terms of total exercise time may have been insufficient to achieve these effects. However, caregiver-mediated exercises showed a favorable impact on secondary outcome measures of mood for both patient and caregiver. CLINICAL TRIAL REGISTRATION: NTR4300, URL- http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4300.

Caregiver-mediated exercises for improving outcomes after stroke.

BACKGROUND: Stroke is a major cause of long-term disability in adults. Several systematic reviews have shown that a higher intensity of training can lead to better functional outcomes after stroke. Currently, the resources in inpatient settings are not always sufficient and innovative methods are necessary to meet these recommendations without increasing healthcare costs. A resource efficient method to augment intensity of training could be to involve caregivers in exercise training. A caregiver-mediated exercise programme has the potential to improve outcomes in terms of body function, activities, and participation in people with stroke. In addition, caregivers are more actively involved in the rehabilitation process, which may increase feelings of empowerment with reduced levels of caregiver burden and could facilitate the transition from rehabilitation facility (in hospital, rehabilitation centre, or nursing home) to home setting. As a consequence, length of stay might be reduced and early supported discharge could be enhanced. OBJECTIVES: To determine if caregiver-mediated exercises (CME) improve functional ability and health-related quality of life in people with stroke, and to determine the effect on caregiver burden. SEARCH METHODS: We searched the Cochrane Stroke Group Trials Register (October 2015), CENTRAL (the Cochrane Library, 2015, Issue 10), MEDLINE (1946 to October 2015), Embase (1980 to December 2015), CINAHL (1982 to December 2015), SPORTDiscus (1985 to December 2015), three additional databases (two in October 2015, one in December 2015), and six additional trial registers (October 2015). We also screened reference lists of relevant publications and contacted authors in the field. SELECTION CRITERIA: Randomised controlled trials comparing CME to usual care, no intervention, or another intervention as long as it was not caregiver-mediated, aimed at improving motor function in people who have had a stroke. DATA COLLECTION AND ANALYSIS: Two review authors independently selected trials. One review author extracted data, and assessed quality and risk of bias, and a second review author cross-checked these data and assessed quality. We determined the quality of the evidence using GRADE. The small number of included studies limited the pre-planned analyses. MAIN RESULTS: We included nine trials about CME, of which six trials with 333 patient-caregiver couples were included in the meta-analysis. The small number of studies, participants, and a variety of outcome measures rendered summarising and combining of data in meta-analysis difficult. In addition, in some studies, CME was the only intervention (CME-core), whereas in other studies, caregivers provided another, existing intervention, such as constraint-induced movement therapy. For trials in the latter category, it was difficult to separate the effects of CME from the effects of the other intervention.We found no significant effect of CME on basic ADL when pooling all trial data post intervention (4 studies; standardised mean difference (SMD) 0.21, 95% confidence interval (CI) -0.02 to 0.44; P = 0.07; moderate-quality evidence) or at follow-up (2 studies; mean difference (MD) 2.69, 95% CI -8.18 to 13.55; P = 0.63; low-quality evidence). In addition, we found no significant effects of CME on extended ADL at post intervention (two studies; SMD 0.07, 95% CI -0.21 to 0.35; P = 0.64; low-quality evidence) or at follow-up (2 studies; SMD 0.11, 95% CI -0.17 to 0.39; P = 0.45; low-quality evidence).Caregiver burden did not increase at the end of the intervention (2 studies; SMD -0.04, 95% CI -0.45 to 0.37; P = 0.86; moderate-quality evidence) or at follow-up (1 study; MD 0.60, 95% CI -0.71 to 1.91; P = 0.37; very low-quality evidence).At the end of intervention, CME significantly improved the secondary outcomes of standing balance (3 studies; SMD 0.53, 95% CI 0.19 to 0.87; P = 0.002; low-quality evidence) and quality of life (1 study; physical functioning: MD 12.40, 95% CI 1.67 to 23.13; P = 0.02; mobility: MD 18.20, 95% CI 7.54 to 28.86; P = 0.0008; general recovery: MD 15.10, 95% CI 8.44 to 21.76; P < 0.00001; very low-quality evidence). At follow-up, we found a significant effect in favour of CME for Six-Minute Walking Test distance (1 study; MD 109.50 m, 95% CI 17.12 to 201.88; P = 0.02; very low-quality evidence). We also found a significant effect in favour of the control group at the end of intervention, regarding performance time on the Wolf Motor Function test (2 studies; MD -1.72, 95% CI -2.23 to -1.21; P < 0.00001; low-quality evidence). We found no significant effects for the other secondary outcomes (i.e. PATIENT: motor impairment, upper limb function, mood, fatigue, length of stay and adverse events; caregiver: mood and quality of life).In contrast to the primary analysis, sensitivity analysis of CME-core showed a significant effect of CME on basic ADL post intervention (2 studies; MD 9.45, 95% CI 2.11 to 16.78; P = 0.01; moderate-quality evidence).The methodological quality of the included trials and variability in interventions (e.g. content, timing, and duration), affected the validity and generalisability of these observed results. AUTHORS' CONCLUSIONS: There is very low- to moderate-quality evidence that CME may be a valuable intervention to augment the pallet of therapeutic options for stroke rehabilitation. Included studies were small, heterogeneous, and some trials had an unclear or high risk of bias. Future high-quality research should determine whether CME interventions are (cost-)effective.

Caregiver-mediated exercises with e-health support for early supported discharge after stroke (CARE4STROKE): study protocol for a randomized controlled trial.

BACKGROUND: Several systematic reviews have shown that additional exercise therapy has a positive effect on functional outcome after stroke. However, there is an urgent need for resource-efficient methods to augment rehabilitation services without increasing health care costs. Asking informal caregivers to do exercises with their loved ones, combined with e-health services may be a cost-effective method to promote early supported discharge with increased functional outcome. The primary aim of the CARE4STROKE study is to evaluate the effects and cost-effectiveness of a caregiver-mediated exercises program combined with e-health services after stroke in terms of self-reported mobility and length of stay. METHODS: An observer-blinded randomized controlled trial, in which 66 stroke-patients admitted to a hospital stroke unit, rehabilitation center or nursing home are randomly assigned to either 8 weeks of the CARE4STROKE program in addition to usual care (i.e., experimental group) or 8 weeks of usual care alone (i.e., control group). The CARE4STROKE program is compiled in consultation with a trained physical therapist. A tablet computer is used to present video-based exercises for gait and gait-related activities in which a caregiver acts as an exercise coach. Primary outcomes are the mobility domain of the Stroke Impact Scale and length of stay. Secondary outcomes are the other domains of the Stroke Impact Scale, motor impairment, strength, walking ability, balance, mobility, (Extended) Activities of Daily Living, psychosocial functioning, self-efficacy, fatigue, health-related quality of life of the patient as well as the experienced strain, psychosocial functioning and quality of life of the caregiver. An economic evaluation will be conducted from the societal and health care perspective. DISCUSSION: The main aspects of the CARE4STROKE program are 1) increasing intensity of training by doing exercises with a caregiver in addition to usual care and 2) e-health support. We hypothesize this program leads to better functional outcome and early supported discharge, resulting in reduced costs. TRIAL REGISTRATION: The study is registered in the Dutch trial register as NTR4300, registered 2 December 2013.

Recovery of walking ability using a robotic device in subacute stroke patients: a randomized controlled study.

PURPOSE: This study investigates the effectiveness of Lokomat + conventional therapy in recovering walking ability in non-ambulatory subacute stroke subjects involved in inpatient rehabilitation. METHOD: Thirty first-ever stroke patients completed 8 weeks of intervention. One group (n = 16) received Lokomat therapy twice a week, combined with three times 30 min a week of conventional overground therapy. The second group (n = 14) received conventional assisted overground therapy only, during a similar amount of time (3.5 h a week). The intervention was part of the normal rehabilitation program. Primary outcome measure was walking speed. Secondary outcome measures assessed other walking- and mobility-related tests, lower-limb strength and quality of life measures. All outcome measures were assessed before and after the intervention and at wk 24 and wk 36 after start of the intervention. RESULTS: Patients showed significant (p < 0.05) gains in walking speed, other walking- and mobility related tests, and strength of the paretic knee extensors relative to baseline at all assessments. However, there were no significant differences in improvements in any of the variables between groups at any time during the study. CONCLUSION: These results indicate that substituting Lokomat therapy for some of conventional therapy is as effective in recovering walking ability in non-ambulatory stroke patients as conventional therapy alone. Implications for Rehabilitation Recovery of walking after stroke is important. Robot-assisted therapy is currently receiving much attention in research and rehabilitation practice as devices such as the Lokomat seem to be promising assistive devices. Technical developments, sub-optimal study designs in literature and new therapy insights warrant new effectiveness studies. RESULTS of a financially and practically feasible study indicate that substituting Lokomat therapy for some of conventional therapy is as effective in recovering walking ability in non-ambulatory stroke patients as compared to conventional overground therapy alone.

Relationship among shoulder proprioception, kinematics, and pain after stroke.

OBJECTIVE: To identify a possible relationship among chronic poststroke shoulder pain (PSSP), scapular resting pose, and shoulder proprioception. DESIGN: Case-control study. SETTING: Rehabilitation center. PARTICIPANTS: A total of 21 inpatients with stroke and 10 healthy control subjects. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Orientations of both the contralateral and ipsilateral (ie, paretic and nonparetic) shoulders during rest in degrees, angular displacement (degrees) for threshold to detection of passive motion (TDPM) tests, and absolute error (degrees) for passive reproduction of joint position (PRJP) tests. RESULTS: The contralateral shoulder of patients with PSSP showed more scapular lateral rotation and larger TDPM and PRJP scores than both patients without PSSP and control subjects. Additionally, the contralateral shoulder of patients with deteriorated proprioception showed more scapular lateral rotation than control subjects, whereas their ipsilateral shoulder showed more scapular lateral rotation than both control subjects and patients with good proprioception. CONCLUSIONS: A clear relation among affected shoulder kinematics, affected proprioception, and PSSP was found. In determining the risk of developing PSSP, attention should be paid to a patients shoulder proprioception and kinematics. If both are altered after stroke, this could worsen the initial pathology or cause secondary pathologies and thus initiate a vicious circle of repetitive soft tissue damage leading to chronic PSSP. Additionally, more attention should be paid to the ipsilateral (ie, nonparetic) shoulder because it could be used in determining the risk of developing PSSP in the contralateral (ie, paretic) shoulder.

Muscle function of knee extensors and flexors after stroke is selectively impaired at shorter muscle lengths.

OBJECTIVE: To investigate whether muscle strength is selectively more affected at shorter lengths of thigh muscles as result of stroke and to determine whether this is associated with impaired neural activation at shorter muscle lengths. DESIGN: Case-control study. SUBJECTS: Fourteen patients with sub-acute stroke, and 12 able-bodied controls. METHODS: In patients (bilaterally) and able-bodied controls torque and activation was measured during maximal voluntary isometric contractions of knee extensors and flexors at 30 degrees , 60 degrees and 90 degrees knee flexion. RESULTS: The paretic knee extensors showed lower normalized maximal torques (73%) and lower normalized activation (71%) compared with control at 30 degrees . The paretic knee flexors showed lower normalized maximal torques at 60 degrees (64%) and 90 degrees (45%) with non-significantly lower normalized activation (~79% and ~67%, respectively). CONCLUSION: As a result of stroke, lower muscle torque at shorter muscle lengths of the knee extensors is associated with a length-dependent lower voluntary activation, which may also be the case for the flexor muscles, but not with altered co-activation. We recommend investigating the role of specific training of paretic knee extensors and flexors in especially shortened positions to improve recovery of function after stroke.

Rhythm perturbations in acoustically paced treadmill walking after stroke.

BACKGROUND: In rehabilitation, acoustic rhythms are often used to improve gait after stroke. Acoustic cueing may enhance gait coordination by creating a stable coupling between heel strikes and metronome beats and provide a means to train the adaptability of gait coordination to environmental changes, as required in everyday life ambulation. OBJECTIVE: To examine the stability and adaptability of auditory-motor synchronization in acoustically paced treadmill walking in stroke patients. METHODS: Eleven stroke patients and 10 healthy controls walked on a treadmill at preferred speed and cadence under no metronome, single-metronome (pacing only paretic or nonparetic steps), and double-metronome (pacing both footfalls) conditions. The stability of auditory-motor synchronization was quantified by the variability of the phase relation between footfalls and beats. In a separate session, the acoustic rhythms were perturbed and adaptations to restore auditory-motor synchronization were quantified. RESULTS: For both groups, auditory-motor synchronization was more stable for double-metronome than single-metronome conditions, with stroke patients exhibiting an overall weaker coupling of footfalls to metronome beats than controls. The recovery characteristics following rhythm perturbations corroborated the stability findings and further revealed that stroke patients had difficulty in accelerating their steps and instead preferred a slower-step response to restore synchronization. CONCLUSIONS: In gait rehabilitation practice, the use of acoustic rhythms may be more effective when both footfalls are paced. In addition, rhythm perturbations during acoustically paced treadmill walking may not only be employed to evaluate the stability of auditory-motor synchronization but also have promising implications for evaluation and training of gait adaptations in neurorehabilitation practice.

Kinematics of the contralateral and ipsilateral shoulder: a possible relationship with post-stroke shoulder pain.

OBJECTIVE: Post-stroke shoulder pain is a common phenomenon in hemiplegia and impedes rehabilitation. The aim of this study was to identify a possible relationship between post-stroke shoulder pain, scapula resting position and shoulder motion. METHODS: Shoulder kinematics of 27 patients after stroke (17 men) were compared with 10 healthy age-matched control subjects. Using an electromagnetic tracking device, the kinematics of both the contralateral and ipsilateral (i.e. paretic and non-paretic) arm during active and passive abduction and forward flexion were measured and expressed in Euler angles. RESULTS: Scapular lateral rotation relative to the thorax was increased in patients with post-stroke shoulder pain compared with both patients without post-stroke shoulder pain and control subjects at rest as well as during arm abduction and forward flexion. Additionally, glenohumeral elevation was decreased in patients with post-stroke shoulder pain during passive abduction. No differences were found regarding scapula position (displacement relative to the thorax). CONCLUSION: In patients with post-stroke shoulder pain a particular kinematical shoulder pattern was established, characterized by enhanced scapular lateral rotation and diminished glenohumeral mobility.

Proprioception of the shoulder after stroke.

OBJECTIVE: To investigate position sense and kinesthesia of the shoulders of stroke patients. DESIGN: Case-control study. SETTING: A rehabilitation center. PARTICIPANTS: A total of 22 inpatients with stroke and 10 healthy control subjects. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Angular displacement (in degrees) for threshold to detection of passive motion (TDPM) tests and absolute error (in degrees) for passive reproduction of joint position tests. RESULTS: For patients, the TDPM for internal and external rotation was significantly higher for both the contralateral (paretic) side (internal, 7.92 degrees +/-7.19 degrees ; external, 8.46 degrees +/-8.87 degrees ) and the ipsilateral (nonparetic) side (internal, 4.86 degrees +/-5.03 degrees ; external, 6.09 degrees +/-9.15 degrees ) compared with the control group (internal, 1.83 degrees +/-1.09 degrees ; external, 1.71 degrees +/-.85 degrees ). Also, for internal rotation, TDPM was significantly higher for patients on the contralateral side compared with the ipsilateral side. For passive reproduction of joint position tests, no differences were found. CONCLUSIONS: Both the contralateral and ipsilateral shoulders of stroke patients showed impaired TDPM. Passive reproduction of joint position does not seem to be affected as a result of a stroke. The control of the muscle spindles and central integration or processing problems of the afferent signals provided by muscle spindles might cause these effects.

Kinematic alterations in the ipsilateral shoulder of patients with hemiplegia due to stroke.

OBJECTIVE: To evaluate the assumption that shoulder kinematic patterns of the ipsilateral, nonparetic shoulder in hemiplegia are similar to kinematics recorded in a healthy population. DESIGN: Case control study of a convenience sample of ten patients with hemiplegia due to stroke in the subacute phase compared with a control group of similar age. Three-dimensional positions of the scapula and humerus were measured and expressed in Euler angles as a function of active arm elevation in the frontal and sagittal plane and during passive humeral internal/external rotation at an elevation angle of 90 degrees in the frontal and sagittal plane. RESULTS: Compared with controls, in the ipsilateral shoulder of patients, we found both a statistically significant diminished scapular protraction during elevation in the sagittal plane (35 +/- 5 vs. 51 +/- 8 degrees at 110 degrees of humeral elevation) and humeral external rotation during arm elevation in the frontal plane (51 +/- 7 vs. 69 +/- 14 degrees at 110 degrees of humeral elevation). Maximal passive humeral external rotation was found to be impaired in the frontal (64 +/- 13 vs. 98 +/- 14 degrees) and sagittal planes (65 +/- 11 vs. 94 +/- 12 degrees). In addition, there was significantly diminished anterior spinal tilt during humeral internal rotation (-5 +/- 10 vs. -20 +/- 9 degrees) and diminished posterior spinal tilt during external rotation in the frontal plane (-14 +/- 8 vs. -3 +/- 6 degrees). Maximal thoracohumeral elevation in patients was significantly impaired (126 +/- 12 vs. 138 +/- 8 degrees). CONCLUSION: Clear kinematic changes in the ipsilateral shoulder in patients with hemiplegia were found, indicating underlying alterations in muscle contraction patterns. The cause remains speculative. These results suggest that the ipsilateral shoulder should not be considered to function normally beforehand.