Scanxiety and quality of life around follow-up imaging in patients with unruptured intracranial aneurysms: a prospective cohort study.

OBJECTIVES: Patients with an unruptured intracranial aneurysm (UIA) may experience scanxiety around follow-up imaging. We studied the prevalence and temporal pattern of scanxiety, and compared quality of life (QoL) outcomes in patients with and without scanxiety. METHODS: We performed a prospective cohort study in a tertiary referral center in the Netherlands between October 2021 and November 2022. We sent questionnaires to patients ≥ 18 years old undergoing UIA follow-up imaging 4 weeks before (T1), immediately after (T2), and 6 weeks after the scan (T3) to assess health-related QoL (HRQoL) and emotional functioning. At T3, we also assessed scanxiety with a purpose-designed questionnaire. We compared differences in QoL outcomes between respondents with and without scanxiety using mixed models. RESULTS: Of 158 eligible patients, 106 (67%) participated (mean age 61 years ± 11 [standard deviation], 84 women). Sixty of the 91 respondents (66%) who completed the purpose-designed questionnaire experienced scanxiety. Of the 49 respondents who experienced scanxiety after the scan, it resolved in 22 (45%) within a day after receiving the radiology report. HRQoL did not differ between respondents with or without scanxiety. Emotional functioning was worse for respondents with scanxiety (mean Hospital Anxiety and Depression Scale sum score difference at T1, 3.6 [95% CI, 0.9-6.3]; T2, 4.1 [95% CI, 1.5-6.8]; and T3, 4.0 [95% CI, 1.5-6.5]). CONCLUSIONS: Two-thirds of the respondents experienced scanxiety around follow-up imaging, which often resolved within a day after receiving results. Patients with scanxiety had similar HRQoL but worse emotional functioning compared to patients without scanxiety. The time between the scan and receiving the results should be minimized to decrease the duration of scanxiety. CLINICAL RELEVANCE STATEMENT: We showed that scanxiety is common in UIA patients, and negatively associated with emotional functioning. Since scanxiety often disappears immediately after receiving the radiology report, it should be communicated to the patient as early as possible to alleviate patients' distress. KEY POINTS: • Many patients with an unruptured intracranial aneurysm experience emotional distress around follow-up imaging, termed "scanxiety." • Patients with scanxiety had worse emotional functioning compared to patients without scanxiety. • Scanxiety often resolved within a day after receiving the radiology report.

A Biopsychosocial Approach to Persistent Post-COVID-19 Fatigue and Cognitive Complaints: Results of the Prospective Multicenter NeNeSCo Study.

OBJECTIVE: To evaluate whether psychological and social factors complement biomedical factors in understanding post-COVID-19 fatigue and cognitive complaints. Additionally, to incorporate objective (neuro-cognitive) and subjective (patient-reported) variables in identifying factors related to post-COVID-19 fatigue and cognitive complaints. DESIGN: Prospective, multicenter cohort study. SETTING: Six Dutch hospitals. PARTICIPANTS: 205 initially hospitalized (March-June 2020), confirmed patients with SARS-CoV-2, aged ≥18 years, physically able to visit the hospital, without prior cognitive deficit, magnetic resonance imaging (MRI) contraindication, or severe neurologic damage post-hospital discharge (N=205). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Nine months post-hospital discharge, a 3T MRI scan and cognitive testing were performed and patients completed questionnaires. Medical data were retrieved from medical dossiers. Hierarchical regression analyses were performed on fatigue severity (Fatigue Severity Scale; FSS) and cognitive complaints (Cognitive Consequences after Intensive Care Admission; CLC-IC; dichotomized into CLC-high/low). Variable blocks: (1) Demographic and premorbid factors (sex, age, education, comorbidities), (2) Illness severity (ICU/general ward, PROMIS physical functioning [PROMIS-PF]), (3) Neuro-cognitive factors (self-reported neurological symptoms, MRI abnormalities, cognitive performance), (4) Psychological and social factors (Hospital Anxiety and Depression Scale [HADS], Utrecht Coping List, Social Support List), and (5) Fatigue or cognitive complaints. RESULTS: The final models explained 60% (FSS) and 48% (CLC-IC) variance, with most blocks (except neuro-cognitive factors for FSS) significantly contributing. Psychological and social factors accounted for 5% (FSS) and 11% (CLC-IC) unique variance. Higher FSS scores were associated with younger age (P=.01), lower PROMIS-PF (P<.001), higher HADS-Depression (P=.03), and CLC-high (P=.04). Greater odds of CLC-high were observed in individuals perceiving more social support (OR=1.07, P<.05). CONCLUSIONS: Results show that psychological and social factors add to biomedical factors in explaining persistent post-COVID-19 fatigue and cognitive complaints. Objective neuro-cognitive factors were not associated with symptoms. Findings highlight the importance of multidomain treatment, including psychosocial care, which may not target biologically-rooted symptoms directly but may reduce associated distress.

The Effects of a Blended Care Intervention in Partners of Patients With Acquired Brain Injury - Results of the CARE4Carer Randomized Controlled Trial.

OBJECTIVE: To assess effects of the CARE4Carer blended care intervention on caregiver mastery and psychosocial functioning compared with usual care in partners of patients with acquired brain injury (ABI). DESIGN: Multicenter randomized controlled trial. SETTING: Nine sites for rehabilitation medicine. PARTICIPANTS: 120 partners of outpatients with ABI were randomly allocated to blended care (N=59) or usual care (N=61). INTERVENTION: The blended care intervention (20 weeks) was aimed at improving caregiving skills and consisted of 9 online sessions, combined with 2 face-to-face consultations with a social worker. MAIN OUTCOME MEASURES: Mastery was assessed with the Caregiver Mastery Scale, secondary outcome measures were caregiver strain (Caregiver Strain Index), family functioning (Family Assessment Device), anxiety and depression (Hospital Anxiety and Depression Scale), burden (self-rated), and quality of life (CarerQol). Assessments were performed at baseline, 24, and 40 weeks. RESULTS: The adjusted mean difference in caregiver mastery between intervention and control group at week 24 was 1.31 (SD3.48, 95% confidence interval (CI) -0.12 to 2.74, P=.072) and at week 40 was 1.31 (SD3.69, 95% CI -0.26 to 2.88, P=.100). In the per protocol analysis, the adjusted mean difference in caregiver mastery at week 24 was 1.53 (SD3.38, 95% CI 0.10 to 2.96, P=.036) and at week 40 was 1.57 (SD3.63, 95% CI 0.01 to 3.14, P=.049). Regarding secondary outcomes, caregiver strain was lower in the intervention group in the per protocol analysis at week 40. Family functioning was higher in the intervention group in week 24, whereas anxiety was lower at both timepoints. CONCLUSIONS: In the subset of participants who were able to complete the intervention, caregiver mastery and psychosocial functioning improved. Future work should focus on improving adherence as this will optimize beneficial effects of blended care.

Development and validation of MyCommunication-Adults, a self-report communicative participation measure.

BACKGROUND: People with communication problems experience challenges in participation. Optimizing communicative participation for this population is an important outcome of speech and language therapy. Participation experiences are best assessed from the patient's perspective, using a patient-reported outcome measure (PROM). The Communicative Participation Item Bank (CPIB) has been developed to identify perceived problems in communicative participation. However, previous research has shown that the item bank does not cover all domains and concepts of communicative participation, contains general communication items, and is not suitable for all people with communication problems. AIMS: To develop a comprehensive PROM aimed at measuring communicative participation for all adults with communication problems and test its content validity. METHODS & PROCEDURES: An initial pool of 242 items was based on three sources: relevant content from an earlier literature review and concept elicitation study, and the translation of the items of the CPIB. This item pool was pilot-tested for comprehensibility and comprehensiveness using cognitive debriefing interviews in adults with different communication problems (speech, language, voice, hearing and cognitive communication disorders). This resulted in a second version of the item bank. The content validity of this version was tested in a group of professionals. The last (third) version of 133 items was tested for content validity in a second, new group of adults with various communication problems. OUTCOMES & RESULTS: The initial pool of 242 items was developed and pilot-tested in 27 adults with different communication problems. After modifications, 161 items remained, which were tested in a content validity study with 25 people with different communication problems and five professionals (in the field of speech and language therapy and speech and language research). The professionals considered 91.9% of the item bank relevant and comprehensible, and comprehensive by adding two items. The item bank was then considered relevant, comprehensible and comprehensive by the group of adults with communication problems. A total of 133 items remained in the item bank, related to the International Classification of Functioning, Disability and Health (ICF) Activities and Participation domains 'mobility', 'self-care', 'domestic life', 'interpersonal interactions and relationships', 'major life areas' and 'community, social and civic life'. CONCLUSIONS & IMPLICATIONS: MyCommunication-Adults is an item bank for measuring communicative participation in adults with communication difficulties. The next step is to test the psychometric properties of the item bank, in order to establish a final item bank. The refined description of the construct of communicative participation can already be used for participation-focused goal-setting between individuals with communication problems and speech and language therapists. WHAT THIS PAPER ADDS: What is already known on the subject The CPIB was developed to measure communicative participation in community-dwelling adults with communication problems. The item bank does not cover all domains and concepts of communicative participation, contains general communication items and not all questions seem to be relevant for specific target groups (e.g., hearing population). What this paper adds to the existing knowledge This study presents a refined description of the construct of communicative participation and the development of a new comprehensive PROM aimed at measuring this construct for all adults with communication difficulties. The development of the PROM is based on a previously conducted literature review and concept elicitation study. This study describes the development process of this new PROM, called MyCommunication-Adults, and the assessment of its content validity. What are the potential or actual clinical implications of this work? The refined description of the construct of communicative participation can be used for participation-focused goal-setting between individuals with communication problems and speech and language therapists.

Development and content validity of the cognition in daily life scale (CDL).

Cognitive impairment can negatively influence daily functioning. Current cognitive measures are essential for diagnosing cognitive impairment, but findings on these tests do not always represent the level of cognitive functioning in daily life. Therefore, this study aimed to design a structured measurement instrument to observe and rate the impact of cognitive impairment in daily life, named the cognition in daily life scale for persons with cognitive problems (CDL). In this paper we describe the development, expected usability, and psychometric properties (content and face validity) of the instrument. The CDL was established through three consecutive development phases: (1) item selection, (2) item categorization and comparison, and (3) item revision and manual construction. Subsequently, a panel of eleven international experts rated the relevance of the selected items and provided comments on the expected usability and face validity. Content validity was estimated with the content validity index, based on which four items were removed. The experts' comments led to minor adjustments of the manual, domains, and formulation of the maintained items. The final instrument consists of 65 items describing behaviour that relies on cognitive functions within six domains. Future research should focus on evaluating the construct validity and reliability of the CDL.

Continuous Theta-Burst Stimulation of the Contralesional Primary Motor Cortex for Promotion of Upper Limb Recovery After Stroke: A Randomized Controlled Trial.

BACKGROUND: Despite improvements in acute stroke therapies and rehabilitation strategies, many stroke patients are left with long-term upper limb motor impairment. We assessed whether an inhibitory repetitive transcranial magnetic stimulation treatment paradigm started within 3 weeks after stroke onset promotes upper limb motor recovery. METHODS: We performed a single-center randomized, sham-controlled clinical trial. Patients with ischemic stroke or intracerebral hemorrhage and unilateral upper limb motor impairment were randomized to 10 daily sessions of active or sham continuous theta-burst stimulation (cTBS) of the contralesional primary motor cortex combined with standard upper limb therapy, started within 3 weeks after stroke onset. The primary outcome was the change in the Action Research Arm Test score from baseline (pretreatment) at 3 months after stroke. Secondary outcomes included the score on the modified Rankin Scale at 3 months and the length of stay at the rehabilitation center. Statistical analyses were performed using mixed models for repeated measures. RESULTS: We enrolled 60 patients between April 2017 and February 2021, of whom 29 were randomized to active cTBS and 31 to sham cTBS. One patient randomized to active cTBS withdrew consent before the intervention and was excluded from the analyses. The mean difference in the change in Action Research Arm Test score from baseline at 3 months poststroke was 9.6 points ([95% CI, 1.2-17.9]; P=0.0244) in favor of active cTBS. Active cTBS was associated with better scores on the modified Rankin Scale at 3 months (OR, 0.2 [95% CI, 0.1-0.8]; P=0.0225) and with an 18 days shorter length of stay at the rehabilitation center than sham cTBS ([95% CI, 0.0-36.4]; P=0.0494). There were no serious adverse events. CONCLUSIONS: Ten daily sessions of cTBS of the contralesional primary motor cortex combined with upper limb training, started within 3 weeks after stroke onset, promote recovery of the upper limb, reduce disability and dependence and leads to earlier discharge from the rehabilitation center. REGISTRATION: URL: https://trialsearch.who.int/; Unique identifier: NTR6133.

Neurological and (neuro)psychological sequelae in intensive care and general ward COVID-19 survivors.

BACKGROUND AND PURPOSE: Coronavirus disease 2019 (COVID-19) affects the brain, leading to long-term complaints. Studies combining brain abnormalities with objective and subjective consequences are lacking. Long-term structural brain abnormalities, neurological and (neuro)psychological consequences in COVID-19 patients admitted to the intensive care unit (ICU) or general ward were investigated. The aim was to create a multidisciplinary view on the impact of severe COVID-19 on functioning and to compare long-term consequences between ICU and general ward patients. METHODS: This multicentre prospective cohort study assessed brain abnormalities (3 T magnetic resonance imaging), cognitive dysfunction (neuropsychological test battery), neurological symptoms, cognitive complaints, emotional distress and wellbeing (self-report questionnaires) in ICU and general ward (non-ICU) survivors. RESULTS: In al, 101 ICU and 104 non-ICU patients participated 8-10 months post-hospital discharge. Significantly more ICU patients exhibited cerebral microbleeds (61% vs. 32%, p < 0.001) and had higher numbers of microbleeds (p < 0.001). No group differences were found in cognitive dysfunction, neurological symptoms, cognitive complaints, emotional distress or wellbeing. The number of microbleeds did not predict cognitive dysfunction. In the complete sample, cognitive screening suggested cognitive dysfunction in 41%, and standard neuropsychological testing showed cognitive dysfunction in 12%; 62% reported ≥3 cognitive complaints. Clinically relevant scores of depression, anxiety and post-traumatic stress were found in 15%, 19% and 12%, respectively; 28% experienced insomnia and 51% severe fatigue. CONCLUSION: Coronavirus disease 2019 ICU survivors had a higher prevalence for microbleeds but not for cognitive dysfunction compared to general ward survivors. Self-reported symptoms exceeded cognitive dysfunction. Cognitive complaints, neurological symptoms and severe fatigue were frequently reported in both groups, fitting the post-COVID-19 syndrome.

Accelerometer-measured physical activity, sedentary behavior, and sleep in children with cerebral palsy and their adherence to the 24-hour activity guidelines.

AIM: To measure and describe the 24-hour activities (i.e. physical activity, sedentary behavior, and sleep) and to examine adherence to the 24-hour activity guidelines among children with cerebral palsy (CP) using actigraphy. METHOD: Children's 24-hour activities were recorded over 7 days using hip- and wrist-worn ActiGraph wGT3X-BT accelerometers. RESULTS: In total, 362 days and 340 nights from 54 children with CP (Gross Motor Function Classification System [GMFCS] levels I-III; 44% females; median age [range] 6 years 6 months [3-12 years]) were included. Mean (SD) daily wear time was 746.2 (48.9) minutes, of which children spent on average 33.8% in light physical activity (251.6 [58.7] minutes per day), 5.2% in moderate-to-vigorous physical activity (38.5 [20.1] minutes per day), and the remaining 61.1% being sedentary (456.1 [80.4] minutes per day). Physical activity decreased while sedentary behavior increased with increasing GMFCS level. In total, 13% of all children met the physical activity recommendations, and 35% met the age-appropriate sleep duration recommendation. The proportion of children meeting the combined 24-hour guidelines for physical activity and sleep was low (5.9%), especially in those classified in GMFCS level III (0%). INTERPRETATION: The observed low 24-hour guideline adherence rates emphasize the importance of considering the entire continuum of movement behaviors in the care of children with CP, in efforts to promote healthy lifestyle behaviors and prevent negative health outcomes.

Prevalence and Determinants of Pain in Spinal Cord Injury During Initial Inpatient Rehabilitation: Data From the Dutch Spinal Cord Injury Database.

OBJECTIVE: To describe the prevalence and characteristics of spinal cord injury (SCI)-related pain during initial inpatient rehabilitation and to investigate relationships with demographic and lesion characteristics. DESIGN: Cohort during inpatient rehabilitation. SETTING: Eight specialized SCI rehabilitation centers in the Netherlands. PARTICIPANTS: Patients with newly acquired SCI admitted for inpatient rehabilitation between November 2013 and August 2019 (N=1432). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Presence of pain at admission and discharge. Logistic regression analyses were used to study the prevalence of pain related to sex, age, etiology, completeness, and level of injury. RESULTS: Data from 1432 patients were available. Of these patients 64.6% were male, mean age was 56.8 years, 59.9% had a nontraumatic SCI, 63.9% were classified as American Spinal Cord Injury Association Impairment Scale (AIS) D and 56.5% had paraplegia. Prevalence of pain was 61.2% at admission (40.6% nociceptive pain [NocP], 30.2% neuropathic pain [NeuP], 5.4% other pain) and 51.5% at discharge (26.0% NocP, 31.4% NeuP, 5.7% other pain). Having NocP at admission was associated with traumatic SCI. AIS B had a lower risk of NocP than AIS D at admission. Having NocP at discharge was associated with female sex and traumatic SCI. AIS C had a lower risk of NocP at discharge than AIS D. Having NeuP at admission was associated with female sex. Having NeuP at discharge was associated with female sex, age younger than 65 years vs age older than 75 years and tetraplegia. CONCLUSIONS: SCI-related pain is highly prevalent during inpatient rehabilitation. Prevalence of NocP decreased during inpatient rehabilitation, and prevalence of NeuP stayed the same. Different patient and lesion characteristics were related to the presence of SCI-related pain. Healthcare professionals should be aware of these differences in screening patients on presence and development of pain during inpatient rehabilitation.

Feasibility and user-experience of virtual reality in neuropsychological assessment following stroke.

Virtual Reality (VR) offers the possibility to assess cognitive functioning in a dynamic environment resembling daily life. In this cross-sectional study, we used two user interfaces, namely non-immersive VR by using a computer monitor (CM) and immersive VR by using a head-mounted display (HMD). We investigated (1) potential differences in feasibility, user-experience, and a potential preference for one user interface over another between stroke patients and healthy controls; (2) potential differences in feasibility, user-experience, and preference between patients referred for inpatient rehabilitation care and patients referred for outpatient rehabilitation care; and (3) potential demographic and clinical characteristics that were related to patients' preference for one user interface over another. Stroke patients (n = 88) and healthy controls (n = 66) performed a VR-task with a CM and HMD. Both user interfaces were feasible to use, irrespective of clinical referral (in- or outpatient rehabilitation care). Patients reported an enhanced feeling of engagement, transportation, flow, and presence, but more negative side effects when tested with a HMD, compared to a CM. The majority of stroke patients had no preference for one user interface over the other, yet younger patients tended to prefer a HMD. VR seems highly feasible in stroke patients.

Prediction of Cognitive Recovery After Stroke: The Value of Diffusion-Weighted Imaging-Based Measures of Brain Connectivity.

BACKGROUND AND PURPOSE: Prediction of long-term recovery of a poststroke cognitive disorder (PSCD) is currently inaccurate. We assessed whether diffusion-weighted imaging (DWI)-based measures of brain connectivity predict cognitive recovery 1 year after stroke in patients with PSCD in addition to conventional clinical, neuropsychological, and imaging variables. METHODS: This prospective monocenter cohort study included 217 consecutive patients with a clinical diagnosis of ischemic stroke, aged ≥50 years, and Montreal Cognitive Assessment score below 26 during hospitalization. Five weeks after stroke, patients underwent DWI magnetic resonance imaging. Neuropsychological assessment was performed 5 weeks and 1 year after stroke and was used to classify PSCD as absent, modest, or marked. Cognitive recovery was operationalized as a shift to a better PSCD category over time. We evaluated 4 DWI-based measures of brain connectivity: global network efficiency and mean connectivity strength, both weighted for mean diffusivity and fractional anisotropy. Conventional predictors were age, sex, level of education, clinical stroke characteristics, neuropsychological variables, and magnetic resonance imaging findings (eg, infarct size). DWI-based measures of brain connectivity were added to a multivariable model to assess additive predictive value. RESULTS: Of 135 patients (mean age, 71 years; 95 men [70%]) with PSCD 5 weeks after ischemic stroke, 41 (30%) showed cognitive recovery. Three of 4 brain connectivity measures met the predefined threshold of P<0.1 in univariable regression analysis. There was no added value of these measures to a multivariable model that included level of education and infarct size as significant predictors of cognitive recovery. CONCLUSIONS: Current DWI-based measures of brain connectivity appear to predict recovery of PSCD but at present have no added value over conventional predictors.

Pattern of muscle strength improvement after intravenous immunoglobulin therapy in multifocal motor neuropathy.

INTRODUCTION: In multifocal motor neuropathy (MMN), knowledge about the pattern of treatment response in a wide spectrum of muscle groups, distal as well as proximal, after intravenous immunoglobulin (IVIg) initiation is lacking. METHODS: Hand-held dynamometry data of 11 upper and lower limb muscles, from 47 patients with MMN was reviewed. Linear mixed models were used to determine the treatment response after IVIg initiation and its relationship with initial muscle weakness. RESULTS: All muscle groups showed a positive treatment response after IVIg initiation. Changes in SD scores ranged from +0.1 to +0.95. A strong association between weakness at baseline and the magnitude of the treatment response was found. DISCUSSION: Improved muscle strength in response to IVIg appears not only in distal, but to a similar degree also in proximal muscle groups in MMN, with the largest response in muscle groups that show the greatest initial weakness.

Prevalence of cognitive impairment and change in patients with breast cancer: A systematic review of longitudinal studies.

OBJECTIVE: Patients with breast cancer face cognitive impairment that affects their quality of life; partially attributable to treatment. Our aim was to detail the prevalence and change of cognitive impairment during the course of treatment. We also investigated the effect of therapy (chemotherapy [CT]) vs. radiotherapy and/or endocrine therapy vs. healthy controls). METHODS: This article reviews longitudinal cohort studies published to date in Medline and Embase that (i) assess cognition before and after therapy, (ii) report prevalence cognitive impairment or change, and (iii) use standardized and valid neuropsychological tests. We used the original authors' criteria for cognitive impairment. RESULTS: The title and abstract of 891 articles were screened, resulting in the identification of 90 potentially relevant articles while applying the eligibility criteria. After full-text examination, 17 studies were included. Prevalence of cognitive impairment range from 25% before therapy, through 24% after therapy to 21% at maximal 1-year follow-up (FU). Compared to their pretreatment cognitive functioning, 24% of patients decline after treatment and 24% at 1-year FU. Some studies also reported cognitive improvement showing that 15% and 31% of patients improve, respectively. In general, patients undergoing CT have a higher chance of cognitive impairment and decline than no-CT patients and healthy controls. CONCLUSIONS: This study shows that one out of four breast cancer patients shows cognitive impairment prior to treatment administration CT and a significant number of patients decline during the course of disease, suggesting that cognitive impairment is not exclusively related to CT and/or no-CT therapies. This study shows that assessment of cognitive functioning, ideally over time, is crucial and may help the implementation of personalized rehabilitation pathways.

Sleep problems in children with cerebral palsy and their parents.

AIM: To describe: (1) the frequency and types of sleep problems, (2) parent-rated satisfaction with their child's and their own sleep, and (3) child factors related to the occurrence of sleep problems in children with cerebral palsy (CP) and their parents. The secondary objective was to compare the sleep outcomes of children with CP with those from typically developing children and their parents. METHOD: The Sleep section of the 24-hour activity checklist was used to assess the sleep of children with CP and their parents and the sleep of typically developing children and their parents. RESULTS: The sleep outcomes of 90 children with CP (median age 5y, range 0-11y, 53 males, 37 females, 84.4% ambulatory) and 157 typically developing peers (median age 5y, range 0-12y; 79 males, 78 females) and their parents were collected. Children with CP were more likely to have a sleep problem than typically developing children. Non-ambulatory children with CP were more severely affected by sleep problems than ambulatory children. The parents of non-ambulatory children were less satisfied about their child's and their own sleep. Waking up during the night, pain/discomfort in bed, and daytime fatigue were more common in children with CP and more prevalent in children who were non-ambulatory. INTERPRETATION: These findings highlight the need to integrate sleep assessment into routine paediatric health care practice. What this paper adds Children with cerebral palsy (CP) are more likely to have a sleep problem than typically developing peers. Non-ambulatory children with CP are more severely affected by sleep problems. One-third of parents of children with CP report feeling sleep-deprived often or always compared to a quarter of parents of typically developing children.

Parents' perspectives on nusinersen treatment for children with spinal muscular atrophy.

AIM: To gain insight into parents' perspectives about their decision-making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process. METHOD: This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis. RESULTS: Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information. INTERPRETATION: It is important physicians understand that there are different perspectives influencing the decision-making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision. What this paper adds Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences. Parents' perspectives varied from battling the disease to preserving quality of life. Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment. Open communication about the pros and cons of treatment with clinicians facilitated decision-making. Clear and honest information facilitated the alignment of values and goals.

Evaluating communication partner training in healthcare centres: Understanding the mechanisms of behaviour change.

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.

CoCo - participation: The development and clinical use of a novel inventory measuring cognitive complaints in daily life.

Cognitive difficulties can be subtle and only come to light when patients return home from inpatient care and start to participate in society. Subjective cognitive complaints often interfere with participation, hence capturing cognitive complaints systematically is important. We developed a patient- and relative-reported measure to assess cognitive complaints during daily life activities across the memory, attention and executive domain for patients with acquired brain injury (ABI). The inventory Cognitive Complaints - Participation (CoCo-P) was created based on a literature review, consultations with experts, semi-structured interviews with patients, and a quantitative study. The inventory was administered to patients with ABI (n = 46), their relatives (n = 33) and healthy controls (n = 102) to finalize the inventory. We examined the reported complaints per daily life activity and cognitive domain of patients and healthy controls, and we compared the patients' and relatives' reports. The majority of patients (87-96%) experienced cognitive complaints, mostly related to attention, at work/education, during leisure activities, and in contact with family/friends and community. Patients reported more cognitive complaints than relatives. The CoCo-P seems appropriate to capture cognitive complaints in daily life in patients with mild ABI. Additional research is needed in terms of reliability and validity.

The relationship between social cognition and participation in the long term after stroke.

Social cognitive impairments may play a role in participation restrictions after stroke. Understanding their relationship could inform treatment approaches to improve participation. We investigated the relationship between social cognition and participation in the long term after stroke. Of 395 patients participating in a large prospective cohort study, cross-sectional data were available at 3-4 years post-stroke of 118 patients on tests for emotion recognition, theory of mind, empathy, and behaviour regulation. Participation was assessed with the Utrecht Scale for Evaluation of Rehabilitation - Participation (USER-P). Bivariate and multivariate regression analysis were used to examine the relationship between social cognitive domains and participation. The majority suffered from minor stroke (83.1% scored NIHSS 0-4). Only behaviour regulation was related to participation restrictions in bivariate analysis, but social cognitive impairments did not predict participation restrictions in multivariate regression in this group. To conclude, in a sample of minor stroke patients with mild impairments in theory of mind, emotion recognition and behavioural control, there were no associations with restrictions in participation. Research should examine whether a relationship is present in patients with more severe stroke. In addition, measuring social aspects of participation is necessary to further unravel this relationship, to determine treatment targets for improving participation.

To What Extent is Walking Ability Associated with Participation in People after Stroke?

OBJECTIVES: This study aims to 1) identify the relation between walking ability and participation after stroke and 2) explore whether change in walking ability is associated with change in participation over time in community living-people after stroke. MATERIALS AND METHODS: Fifty-two people after stroke were assessed at baseline and after a 6-week gait training intervention. People were included between two weeks and six months after stroke. The Utrecht Scale for Evaluation of Rehabilitation-Participation was used to measure participation. Assessment of walking ability included the six-minute walking test for walking endurance, Timed-up & Go test for functional mobility, Mini Balance Evaluation Systems Test for dynamic balance, and total duration of walking activity per day to measure walking activity. RESULTS: At baseline, six-minute walking test, Timed-up & Go test, and Mini Balance Evaluation Systems Test were univariately associated with participation (P < 0.001). Backward multiple regression analysis showed that the Mini Balance Evaluation Systems Test independently explained 55.7% of the variance in participation at baseline. Over time, only change in the six-minute walking test was positively associated with change in participation (R2 = 0.087, P = 0.040). CONCLUSIONS: Cross-sectional associations showed that walking ability, and especially dynamic balance, contributes to participation after stroke. Dynamic balance, as underlying variable for walking, was an important independently related factor to participation after stroke which needs attention during rehabilitation. Longitudinally, improvement in walking endurance was significantly associated with improvement in participation, which indicates the relevance of training walking endurance to improve participation after stroke.

Development and assessment of the inter-rater and intra-rater reproducibility of a self-administration version of the ALSFRS-R.

OBJECTIVE: The Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is widely applied to assess disease severity and progression in patients with motor neuron disease (MND). The objective of the study is to assess the inter-rater and intra-rater reproducibility, i.e., the inter-rater and intra-rater reliability and agreement, of a self-administration version of the ALSFRS-R for use in apps, online platforms, clinical care and trials. METHODS: The self-administration version of the ALSFRS-R was developed based on both patient and expert feedback. To assess the inter-rater reproducibility, 59 patients with MND filled out the ALSFRS-R online and were subsequently assessed on the ALSFRS-R by three raters. To assess the intra-rater reproducibility, patients were invited on two occasions to complete the ALSFRS-R online. Reliability was assessed with intraclass correlation coefficients, agreement was assessed with Bland-Altman plots and paired samples t-tests, and internal consistency was examined with Cronbach's coefficient alpha. RESULTS: The self-administration version of the ALSFRS-R demonstrated excellent inter-rater and intra-rater reliability. The assessment of inter-rater agreement demonstrated small systematic differences between patients and raters and acceptable limits of agreement. The assessment of intra-rater agreement demonstrated no systematic changes between time points; limits of agreement were 4.3 points for the total score and ranged from 1.6 to 2.4 points for the domain scores. Coefficient alpha values were acceptable. DISCUSSION: The self-administration version of the ALSFRS-R demonstrates high reproducibility and can be used in apps and online portals for both individual comparisons, facilitating the management of clinical care and group comparisons in clinical trials.