Background:
Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver ...burden is needed in order to develop supportive interventions.
Aim:
To evaluate the evidence on patient and caregiver factors associated with caregiver burden in amyotrophic lateral sclerosis informal caregivers.
Design:
A systematic review.
Data sources:
Four electronic databases were searched up to 2017. Studies that investigated quantitative relations between patient or caregiver factors and caregiver burden were included. The overall quality of evidence for factors was assessed using the Grading of Recommendations Assessment, Development and Evaluation approach.
Results:
A total of 25 articles were included. High quality of evidence was found for the relation between caregiver burden and the factor “behavioral impairments.” Moderate quality of evidence was found for the relations between caregiver burden and the factors “feelings of depression” of the caregiver and “physical functioning” of the patient. The remaining rated caregiver factors—“feelings of anxiety,” “distress,” “social support,” “family functioning,” and “age”—and patient factors—“bulbar function,” “motor function,” “respiratory function,” “disease duration,” “disinhibition,” “executive functioning,” “cognitive functioning,” “feelings of depression,” and “age”—showed low to very low quality of evidence for their association with caregiver burden.
Conclusion:
Higher caregiver burden is associated with greater behavioral and physical impairment of the patient and with more depressive feelings of the caregiver. This knowledge enables the identification of caregivers at risk for caregiver burden and guides the development of interventions to diminish caregiver burden.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
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.
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.
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.
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.
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.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
To describe the prevalence of secondary health conditions among persons with long-term spinal cord injury, and the relationship between these secondary health conditions and quality of life.
...Multicentre, cross-sectional study.
Individuals (n = 282) with traumatic or non-traumatic spinal cord injury for ≥ 10 years, age at injury 18-35 years, current age 28-65 years, and using a wheelchair.
Occurrence of 13 secondary health conditions was assessed during a consultation with a rehabilitation physician. Quality of life was measured with the International Spinal Cord Injury Quality of Life Basic Data Set.
Median time since injury was 22.0 years. Median number of secondary health conditions was 4. The most prevalent secondary health conditions were: musculoskeletal pain (63.5%), oedema (38.7%), neuropathic pain (34.1%) and urinary tract infections (33.3%). Only oedema showed a significant association with increasing time since injury. Median Total Quality of Life Basic Data Set score was 7. Musculoskeletal pain, pressure ulcers, problematic spasticity and constipation showed an independent association with quality of life in multiple regression analysis, but in general, these associations were weak.
Secondary health conditions are common among persons with long-term spinal cord injury and the following secondary health conditions were independently associated with lower quality of life: musculoskeletal pain, pressure ulcers, problematic spasticity, and constipation. Minimizing the impact of secondary health conditions should be a priority in the long-term care of persons with spinal cord injury.
Background
Communication between people with aphasia and their healthcare professionals (HCPs) can be greatly improved when HCPs are trained in using supportive conversation techniques and tools. ...Communication partner training (CPT) is an umbrella term that covers a range of interventions that train the conversation partners of people with aphasia. Several CPT interventions for HCPs have been developed and used to support HCPs to interact successfully with people with aphasia.
Aims
The objective of this study was to identify the mechanisms of change as a result of a Dutch CPT intervention, named CommuniCare, in order to evaluate and optimise the intervention.
Methods & procedures
A total of 254 HCPs from five different healthcare centres received CommuniCare. An explorative qualitative research design was chosen. Two interviews were conducted with 24 HCPs directly after and 4 months after receiving the training that was part of CommuniCare. Two conceptual frameworks were used to deductively code the interviews. HCPs’ perspectives were coded into a four‐part sequence following CIMO logic: the self‐reported use of supportive conversation techniques or tools pre‐intervention (Context), the intervention elements (Intervention) that evoked certain mechanisms (Mechanisms), resulting in the self‐reported use of supportive conversation techniques and tools post‐intervention (Outcomes). The Capabilities Opportunities Motivation–Behaviour (COM‐B) model was used to fill in the Mechanisms component.
Outcomes & results
Three themes were identified to describe the mechanisms of change that led to an increase in the use of supportive conversation techniques and tools. According to HCPs, (i) information, videos, e‐learning modules, role‐play, feedback during training and coaching on the job increased their psychological capabilities; (ii) information and role‐play increased their automatic motivations; and (iii) information, videos and role‐play increased their reflective motivations. Remaining findings show HCPs’ perspectives on various barriers to use supportive conversation techniques and tools.
Conclusions & implications
HCPs in this study identified elements in our CPT intervention that positively influenced their behaviour change. Of these, role‐play and coaching on the job were particularly important. HCPs suggested this last element should be better implemented. Therefore, healthcare settings wishing to enhance HCPs’ communication skills should first consider enhancing HCPs’ opportunities for experiential learning. Second, healthcare settings should determine which HCPs are suitable to have a role as implementation support practitioners, to support their colleagues in the use of supportive conversation techniques and tools.
What this paper adds
What is already known on this subject?
Several communication partner training (CPT) interventions for healthcare professionals (HCPs) have been developed and used to support HCPs to interact successfully with people with aphasia. To date, there is limited evidence of the mechanisms of change that explain exactly what changes in HCPs' behaviour after CPT and why these changes take place.
What this paper adds to existing knowledge
Evaluating our CPT intervention by identifying mechanisms of change from the perspectives of HCPs provided us with: (i) a better understanding of the elements that should be included in CPT interventions in different contexts; and (ii) an understanding of the important remaining barriers identified by HCPs to use supportive conversation techniques, even after CPT is implemented.
What are the potential or actual clinical implications of this work?
This study shows the different intervention elements in our CPT intervention that improve HCPs' capabilities, motivations or opportunities to use supportive conversation techniques and tools. Essential ingredients of CPT according to HCPs in this study were role‐play and coaching on the job by an expert and were linked to an increase in HCPs' motivations or beliefs about self‐competency. Healthcare settings wishing to enhance HCPs' communication skills should therefore consider appointing implementation support practitioners to coach and support HCPs, and facilitate these practitioners to fulfil this role.
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FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK, VSZLJ
ABSTRACT
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
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Aims and objectives. To study how patients with acute stroke spend their day and to determine whether activity levels of patients with acute stroke in a Dutch university hospital increase after the ...implementation of interventions to stimulate activity.
Background. Previous studies suggest that patients with acute stroke are prone to inactivity. Early mobilisation and increasing levels of activities are part of several guidelines for patients with stroke. However, implementing interventions to increase activity levels is difficult owing to time and money constrains.
Design. This study used a descriptive pre/postdesign.
Methods. Outcomes is assessed on three levels: location, other people involved and activity, and it is determined by direct non‐participant observation. An intervention was implemented to stimulate activity levels of the patients. This intervention consisted of (1) increasing the group therapy session and (2) providing a therapy guide that includes exercises patients can do by themselves or together with nurses, therapists or their family to stimulate the patients to be more active.
Results. In total, 66 patients have been observed: 35 during the first and 31 during the second observation periods. Compared with the first observation period, patients in the second observation period spent less time in their room and spent less time lying in bed (49 vs. 29%). They did spend more time sitting in bed (13% vs. 20%) and sitting supported (14% vs. 24%).
Conclusion. Simple interventions can lead to less inactivity in patients with acute stroke. Nurses should be highly involved in implementing and stimulating these interventions. Also, family can play an important role in reducing inactivity in patients after stroke.
Relevance to clinical practice. Nurses can play an important role in increasing activity levels of patients by using simple interventions.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK, VSZLJ
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.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
The Stroke Specific Quality of Life Scale (SS-QoL) is a well validated measure of health related quality of life in patients with stroke, but with 49 items its length is a disadvantage. A short ...version of the SS-QoL was developed and tested here.
Secondary analyses of three different studies. The short version was developed using data from 141 patients with aneurysmal subarachnoid haemorrhage (SAH) and tested on data from independent samples of 97 patients with SAH and 105 patients with ischaemic stroke or intracerebral haemorrhage. The item with the highest item domain correlation from each of the SS-QoL domains was selected to obtain a 12 item SS-QoL (SS-QoL-12) with a total score and physical and psychosocial subscores. Criterion validity of the SS-QoL-12 scores was tested in each sample with the original SS-QoL as reference.
All three scores of the SS-QoL-12 showed good internal consistency (Cronbach's alpha 0.77-0.89). The SS-Qol-12 scores predicted 88-95% of the variance of the original SS-QoL. Mean differences between the SS-QoL-12 and SS-QoL and their 95% CI were generally within 0.1 points on a 1-5 scale. The limits of agreement were generally within 0.4 points.
The SS-QoL-12 has good criterion validity for all subsets of stroke. Because it consists of only 12 questions, this short form will be easy to use in research and clinical settings.
To examine the temporal evolution of subjective cognitive complaints in the long-term after stroke, and to identify predictors of long-term subjective cognitive complaints.
Prospective cohort study ...including 395 stroke patients. Subjective cognitive complaints were assessed at 2 months, 6 months and 4 years post-stroke, using the Checklist for Cognitive and Emotional consequences following stroke (CLCE-24). The temporal evolution of subjective cognitive complaints was described using multilevel growth modelling. Associations between CLCE-24 cognition score at 4 years post-stroke and baseline characteristics, depression, anxiety, cognitive test performance, and adaptive and maladaptive psychological factors were examined. Significant predictors were entered in a multivariate multilevel model.
A significant increase in subjective cognitive complaints from 2 months up to 4 years (mean 3.7 years, standard deviation (SD) 0.6 years) post-stroke was observed (p≤0.001). Two months post-stroke, 76% of patients reported at least one cognitive complaint, 72% at 6 months, and 89% at 4 years post-stroke. A higher level of subjective cognitive complaints at 2 months and lower scores on adaptive and maladaptive psychological factors were significant independent predictors of a higher level of subjective cognitive complaints at 4 years post-stroke.
Post-stroke subjective cognitive complaints increase over time and can be predicted by the extent of subjective cognitive complaints and the presence of adaptive and maladaptive psychological factors in the early phases after stroke.
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