Exploring the experiences of stroke patients treated with transcranial magnetic stimulation for upper limb recovery: a qualitative study.

BACKGROUND: Transcranial magnetic stimulation (TMS) treatments have shown promise in improving arm recovery in stroke patients. Currently, little is known about patients' experiences with repetitive TMS treatment, and this lack of knowledge may affect optimal implementation in clinical practice. The aim of this explorative study was to gain insight in the perceived effects and experiences of the design and delivery of a rTMS treatment for upper limb recovery from the perspectives of stroke patients. METHODS: This qualitative study was conducted as part of a randomized controlled trial (RCT) in a specialized rehabilitation center. Data were collected through face-to-face semi-structured interviews with 13 stroke patients who completed a 10-day rTMS intervention for upper limb recovery. The interviews were recorded, transcribed verbatim and analyzed using thematic analysis. RESULTS: The major themes that emerged from the patients' feedback were the following: positive experiences of the treatment (experienced physical effects, comfort, therapeutic relationship, receiving information, learning about the brain, no burden of added rTMS treatment session, no unpleasant aspects), concerns (effects of stimulation of the brain, equipment, logistics), general experience of recovery, experienced psychological effects (grateful, sense of purpose, recovery as extra motivation to exercise, disappointment and hope of group allocation), and motivation to participate (personal benefit and cognitions, altruism). Important components related to the positive experience of the design and delivery of the treatment included comfort (i.e. moment of relaxation) and the sensation of a painless treatment without side-effects. Key concerns included uncertainty and anxiety about possible negative consequences and group allocation. CONCLUSIONS: This study demonstrates that rTMS is well accepted by stroke patients with an upper limb paresis. Besides the expectation of a therapeutic benefit, the patients reported various psychological effects. Positive experiences, such as the provision of a short moment of relaxation each day, could have practical implications for clinical stroke rehabilitation settings aimed at improving patient satisfaction. Explanation about and feedback from routine motor recovery progression monitoring at fixed times post-stroke is also valued by patients. Negative emotions may be limited or avoided by transparent and recurrent information delivery in future trials.

Absence of an infarct on MRI is not uncommon after clinical diagnosis of ischemic stroke.

INTRODUCTION: An infarct on brain MRI is often seen as gold standard when diagnosing ischemic stroke. Although MRI has high sensitivity in detecting a lesion shortly after ischemic stroke, this rapidly declines when time progresses. We assessed the occurrence of a negative MRI 4-6 weeks after a discharge diagnosis of ischemic stroke, and compared the clinical characteristics of patients with a positive or negative MRI. PATIENTS AND METHODS: The first 125 patients from a prospective longitudinal study of cognitive recovery after ischemic stroke were included in this study. Clinical characteristics were collected during admission. Per protocol, 4-6 weeks after stroke a brain MRI was performed. We operationalized different levels of certainty of the clinical diagnosis of ischemic stroke of a panel of 3 expert vascular neurologists. RESULTS: Thirty patients (24%) were MRI negative. Patients that were MRI negative had lower stroke severity at admission, shorter duration of hospital-stay, and better functional status at discharge. The panel judged that 18/30 (60%) MRI negative patients and 27/30 (90%) MRI positive patients had a likely diagnosis of ischemic stroke. Compared to MRI negative patients with a less likely diagnosis, those with a likely diagnosis had higher admission stroke severity and more often received an acute intervention. DISCUSSION AND CONCLUSION: Absence of an infarct on MRI is not uncommon 4-6 weeks after a clinical diagnosis of ischemic stroke. The relatively high proportion of MRI negative strokes with a likely clinical diagnosis of ischemic stroke indicates that neurologists should be cautious ruling out the diagnosis based on MRI beyond the acute stroke stage.

A validation study of the Caregiver Mastery Scale for partners of patients with acquired brain injury.

OBJECTIVE: To validate the Caregiver Mastery Scale for partners of patients with acquired brain injury. DESIGN: The score distributions, internal consistency and convergent validity of the Caregiver Mastery Scale were determined. SUBJECTS: A total of 92 partners (53% male, age 62 years) of patients with acquired brain injury (91% stroke) discharged from inpatient rehabilitation (time since injury 32 months). MAIN MEASURES: Outcome measure: Caregiver Mastery Scale. Reference measures: Caregiver Strain Index, Hospital Anxiety and Depression Scale and CarerQoL. RESULTS: The Caregiver Mastery Scale has a normal distribution, with no floor or ceiling effects. Its internal consistency is acceptable (Cronbach's alpha: 0.75). The convergent validity analyses confirmed our hypothesis that higher scores on the Caregiver Mastery Scale correlate with less burden, lower levels of anxiety and depression and greater well-being. Furthermore, partners scoring high on the Caregiver Mastery Scale mostly scored below the clinical cut-off scores on the Caregiver Strain Index and the anxiety and depression subscales of the Hospital Anxiety and Depression Scale, whereas partners scoring low on the Caregiver Mastery Scale were more likely to score above the cut-off points. CONCLUSION: The Caregiver Mastery Scale is a valid instrument to assess the caregiver mastery of partners of patients with acquired brain injury.

Correlates of health related quality of life in adult patients with spinal muscular atrophy.

INTRODUCTION: To improve care for patients with spinal muscular atrophy (SMA), we assessed the physical and mental quality of life (QoL) in 62 adult patients with SMA. METHODS: Physical component scores (PCS) and mental component scores (MCS) of the Short Form-36 Health Survey (SF-36) were obtained. Correlations with demographics, disease severity, and emotional distress were assessed. We used hierarchical multiple regression analysis to identify determinants of QoL. RESULTS: PCS scores were lower, and MCS scores higher than in the healthy reference population. Patients with milder SMA types reported lower scores on several MCS domains. Motor skills scores and emotional distress explained 16% of the variance in PCS. SMA type and emotional distress explained 10% and 45% of the variance of MCS, respectively. CONCLUSIONS: Patients with milder forms of SMA tend to have a reduced mental QoL. Psychological interventions to reduce emotional distress may improve both mental and physical QoL. Muscle Nerve 54: 850-855, 2016.

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.

Process evaluation of the Restore4stroke Self-Management intervention 'Plan Ahead!': a stroke-specific self-management intervention.

OBJECTIVE: To investigate whether the self-management intervention was implemented as intended. Additionally, we studied involvement in and satisfaction with the intervention among patients, their partners and therapists. DESIGN: Mixed method, prospective study. SETTING: Outpatient facilities of hospitals/rehabilitation centres. PARTICIPANTS: Stroke patients, their partners and therapists from the experimental arm of the Restore4Stroke Self-Management study. INTERVENTION: 'Plan Ahead!' is a 10-week self-management intervention for stroke patients and partners, consisting of seven two-hour group sessions. Proactive action planning, education and peer support are main elements of this intervention. MAIN MEASURES: Session logs, questionnaires for therapists, patients and their partners, and focus groups. DATA ANALYSIS: Qualitative data were analysed with thematic analysis supplemented by quasi-statistics. Quantitative data were reported as descriptive statistics. RESULTS: The study sample consisted of 53 patients and 26 partners taking part in the intervention, and all therapists delivering the intervention (N = 19). At least three-quarters of the intervention sessions were attended by 33 patients and 24 partners. On a scale from 1 to 10, patients, partners and therapists rated the intervention with mean scores of 7.5 (SD1.6), 7.8 (SD.7) and 7.4 (SD.7), respectively. Peer support was the most frequently appreciated element for participants and therapists. The proactive action planning tool was adequately applied in 76 of the 96 sessions. CONCLUSION: Although the target audience was reached and both participants and therapists were satisfied with the intervention, the proactive action planning tool that distinguishes the current intervention from existing stroke-specific self-management interventions was only partly implemented according to protocol.

The Restore4Stroke self-management intervention 'Plan ahead!': rationale and description of the treatment protocol based on proactive action planning.

OBJECTIVE: To describe the rationale behind and description of a group-based self-management intervention developed for stroke patients and their partners. RATIONALE: Based on the assumption that proactive coping strategies are beneficial for the re-uptake of daily life by stroke patients and partners, we developed a new stroke-specific, group-based self-management intervention based on proactive action planning. A first concept of the treatment protocol was developed based on the proactive coping theory, the Health Action Process Approach model, existing interventions and expert consultations. Further adjustments were based on two pilot studies, including addition of solution-based therapeutic techniques. DESCRIPTION OF THE INTERVENTION: 'Plan ahead!' is a 10-week group-based self-management intervention, consisting of six 2-hour sessions in the first six weeks and a 2-hour booster session in the 10th week. It is offered in an outpatient setting by two rehabilitation professionals with experience in group counselling and working with stroke patients. It is provided to groups of four stroke patients living at home (stroke ≥2 months ago) and their partners. The main features are (1) proactive action planning as the main constituent, (2) stroke-specific elements and (3) considering partners as full participants. DISCUSSION: This stroke-specific intervention is expected to increase the use of proactive action planning and thus improve the participation of stroke patients and their partners. It is innovative in its aim to change behaviour patterns of participants directly, teaching participants a general action planning strategy and considering partners as full participants with their own goals and opportunities.

Use and experienced effectiveness of non-pharmacological treatments for chronic spinal cord injury related pain in The Netherlands: A cross-sectional survey.

CONTEXT/OBJECTIVE: Chronic pain is a common secondary condition in spinal cord injury (SCI). Pharmacological interventions to reduce pain are associated with side effects. The reported effects of non-pharmacological treatments are unclear. This study aims to examine the self-reported presence and type of pain, and the use, effectiveness and side effects of non-pharmacological treatments for pain. DESIGN: Cross-sectional survey regarding SCI-related pain and non-pharmacological treatments. SETTING: Community, the Netherlands. PARTICIPANTS: Outpatients with SCI from two rehabilitation centers. INTERVENTIONS: Not applicable. OUTCOME MEASURES: Self-reported presence and type of pain, use, effectiveness and side effects of non-pharmacological treatments. RESULTS: A total of 371 patients (41.5%) returned the questionnaire. Median time since onset of SCI was 7 years. Pain following SCI was reported by 262 patients (70.6%). Neuropathic pain was reported most often (74.4%), followed by musculoskeletal pain (51.5%). Of patients with pain, 204 (77.9%) reported past or current use of non-pharmacological treatments. Non-pharmacological treatments used most were physiotherapy (67.6%), physical exercise (44.7%) and massage (22.5%). Of patients using non-pharmacological treatments, 152 patients (74.5%) reported the effect of their treatment. Most treatments for which the effect was reported, were described as moderately effective. Most side effects were reported for cannabis. CONCLUSION: Patients with SCI experiencing pain often use non-pharmacological treatments. Most treatments were described as moderately effective. Research on specific non-pharmacological treatments and different types of pain separately is needed to further determine the effectiveness of non-pharmacological treatments.

The course of physical functioning in the first two years after stroke depends on peoples' individual movement behavior patterns.

BACKGROUND AND PURPOSE: Deterioration of physical functioning after stroke in the long term is regarded as a major problem. Currently, the relationship between "peoples'" movement behavior patterns (the composition of sedentary behavior and physical activity during waking hours) directly after stroke and the development of physical functioning over time is unknown. Therefore, the objectives of this study were to investigate (1) the course of physical functioning within the first two years after returning home after stroke, and (2) the association between physical functioning and baseline movement behavior patterns. METHOD: In the longitudinal RISE cohort study, 200 persons with a first-ever stroke discharged to the home-setting were included. Participants' physical functioning was assessed within three weeks, at six months, and one and two years after discharge using the Stroke Impact Scale (SIS) 3.0 subscale physical and the five-meter walk test (5MWT). Three distinct movement behavior patterns were identified in a previous study at baseline and were used in the current study: (1) sedentary exercisers (sufficiently active and 64% of waking hours sedentary), (2) sedentary movers' (inactive and 63% of waking hours sedentary), and (3) sedentary prolongers (inactive and >78% of waking hours sedentary accumulated in long prolonged bouts). The association between movement behavior patterns and the course of physical functioning was determined using longitudinal generalized estimating equations analyses. RESULTS: Overall participants' physical functioning increased between discharge and six months and declined from six months up to two years. Physical functioning remained stable during the first two years after stroke in sedentary exercisers. Physical functioning improved during the first six months after discharge in sedentary movers and sedentary prolongers and deteriorated in the following six months. Only physical functioning (SIS) of sedentary prolongers further declined from one up to two years. A similar pattern was observed in the 5MWT. CONCLUSION: Movement behavior patterns identified directly after returning home in people with stroke are associated with and are predictive of the course of physical functioning. Highly sedentary and inactive people with stroke have unfavorable outcomes over time than individuals with higher amounts of physical activity.

High occurrence of impaired emotion recognition after ischemic stroke.

INTRODUCTION: Deficits of emotion recognition after ischemic stroke are often overlooked by clinicians, and are mostly not spontaneously reported by patients. However, impaired emotion recognition after stroke negatively affects the ability to return to work and the quality of life. It is still unknown how often impairments of emotion recognition occur shortly after ischemic stroke. We aimed to estimate the occurrence of impaired emotion recognition after ischemic stroke and to characterise these patients with impaired emotion recognition. PATIENTS AND METHODS: Two hundred thirty patients were included, derived from a prospective study of cognitive recovery. Five weeks after ischemic stroke a neuropsychological assessment was performed, including an emotion recognition task (i.e. Ekman 60-faces test). Emotion recognition was regarded as impaired if the total score was below the fifth percentile for a large independent reference sample. RESULTS: Emotion recognition was impaired in 33.5% of patients. Patients with impaired emotion recognition were more likely to have an abnormal Montreal Cognitive Assessment during hospitalisation, and 5 weeks after their stroke, a higher proportion of them had a vascular cognitive disorder (VCD). Even 20% of patients without VCD had impaired emotion recognition.Discussion: Emotion recognition was often impaired after ischemic stroke. This is clinically relevant, since impaired emotion recognition negatively impacts social functioning.Conclusion: Even when there was no cognitive disorder in traditional cognitive domains, emotion recognition was impaired in 1 out of 5 patients. Clinicians should systematically ask patients and their caregivers about deficits in emotion recognition, and, if needed, test for these deficits.

Evaluating the CARE4Carer Blended Care Intervention for Partners of Patients With Acquired Brain Injury: Protocol for a Randomized Controlled Trial.

BACKGROUND: Support programs for partners of patients with acquired brain injury are necessary since these partners experience several unfavorable consequences of caregiving, such as a high burden, emotional distress, and poor quality of life. Evidence-based support strategies that can be included in these support programs are psychoeducation, skill building, problem solving, and improving feelings of mastery. A promising approach would seem to be to combine web-based support with face-to-face consultations, creating a blended care intervention. OBJECTIVE: This paper outlines the protocol of a randomized controlled trial to evaluate the CARE4Carer blended care intervention for partners of patients with acquired brain injury. METHODS: A multicenter two-arm randomized controlled trial will be conducted. A total of 120 partners of patients with acquired brain injury will be recruited from five rehabilitation centers in the Netherlands. The blended care intervention consists of a nine-session web-based support program and two face-to-face consultations with a social worker. Themes that will be addressed are: giving partners insight into their own situation, including possible pitfalls and strengths, learning how to cope with the situation, getting a grip on thoughts and feelings, finding a better balance in the care for the patient with acquired brain injury, thinking about other possible care options, taking care of oneself, and communication. The intervention lasts 20 weeks and the control group will receive usual care. The outcome measures will be assessed at baseline and at 24- and 40-week follow-up. The primary outcome is caregiver mastery. Secondary outcome measures are strain, burden, family functioning, emotional functioning, coping, quality of life, participation, and social network. RESULTS: The effect of the intervention on the primary and secondary outcome measures will be determined. Additional a process evaluation will be conducted. CONCLUSIONS: The findings of this study will be used to improve the care for partners of patients with acquired brain injury. Barriers and facilitators that emerge from the process evaluation will be used in the nationwide implementation of the intervention. TRIAL REGISTRATION: Dutch Trial Register NTR6197; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6197 (Archived by WebCite at http://www.webcitation.org/6xHBAxx0y).

A Role for New Brain Magnetic Resonance Imaging Modalities in Daily Clinical Practice: Protocol of the Prediction of Cognitive Recovery After Stroke (PROCRAS) Study.

BACKGROUND: Cognitive impairment is common after acute ischemic stroke, affecting up to 75% of the patients. About half of the patients will show recovery, whereas the others will remain cognitively impaired or deteriorate. It is difficult to predict these different cognitive outcomes. OBJECTIVE: The objective of this study is to investigate whether diffusion tensor imaging-based measures of brain connectivity predict cognitive recovery after 1 year, in addition to patient characteristics and stroke severity. A specific premise of the Prediction of Cognitive Recovery After Stroke (PROCRAS) study is that it is conducted in a daily practice setting. METHODS: The PROCRAS study is a prospective, mono-center cohort study conducted in a large teaching hospital in the Netherlands. A total of 350 patients suffering from an ischemic stroke who screen positive for cognitive impairment on the Montreal Cognitive Assessment (MoCA<26) in the acute stage will undergo a 3Tesla-Magnetic Resonance Imaging (3T-MRI) with a diffusion-weighted sequence and a neuropsychological assessment. Patients will be classified as being unimpaired, as having a mild vascular cognitive disorder, or as having a major vascular cognitive disorder. One year after stroke, patients will undergo follow-up neuropsychological assessment. The primary endpoint is recovery of cognitive function 1 year after stroke in patients with a confirmed poststroke cognitive disorder. The secondary endpoint is deterioration of cognitive function in the first year after stroke. RESULTS: The study is already ongoing for 1.5 years, and thus far, 252 patients have provided written informed consent. Final results are expected in June 2019. CONCLUSIONS: The PROCRAS study will show the additional predictive value of diffusion tensor imaging-based measures of brain connectivity for cognitive outcome at 1 year in patients with a poststroke cognitive disorder in a daily clinical practice setting. REGISTERED REPORT IDENTIFIER: RR1-10.2196/9431.