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1.
BMC Psychol ; 10(1): 72, 2022 Mar 17.
Artigo em Inglês | MEDLINE | ID: mdl-35300726

RESUMO

BACKGROUND: Amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses affecting not only patients but also the families surrounding them, especially when dependent children are involved. Despite previous research highlighting the vulnerability of children in these families, they are, as yet, often overlooked in healthcare. Efforts are needed to better support children in families living with ALS, both directly and through strengthening parents in their parental role. This study sought to gain a better understanding of parental and children's experiences, struggles and support needs in families living with ALS. METHODS: Semi-structured interviews were conducted with 8 parents with ALS, 13 well parents and 15 children, together representing 17 families. Interview data were analyzed using qualitative content analysis. RESULTS: Three major themes were identified relating to (1) ALS-related transformations in families' homes, activities, roles and relationships, that trigger (2) distress among families, which, in turn, evokes (3) emotional, psychological, educational and practical support needs. For emotional and practical support, parents and children mainly rely on their own family and social network, whereas they seek educational and psychological support from healthcare professionals. CONCLUSIONS: Our findings imply that ALS care professionals may foster family adjustment to living with ALS, most notably through encouraging parents to engage in a dialogue with their children about the many transformations, struggles and needs imposed by ALS and teaching them how to start the dialogue.


Assuntos
Esclerose Amiotrófica Lateral , Esclerose Amiotrófica Lateral/psicologia , Criança , Família/psicologia , Pessoal de Saúde/psicologia , Humanos , Pais/psicologia , Pesquisa Qualitativa
2.
J Rehabil Med ; 54: jrm00271, 2022 May 11.
Artigo em Inglês | MEDLINE | ID: mdl-35191989

RESUMO

OBJECTIVE: To determine whether fatigue is associated with participation and health-related quality of life 5 years after perimesencephalic subarachnoid haemorrhage. DESIGN: Multicentre cross-sectional study. SUBJECTS: Forty-six patients with perimesencephalic subarachnoid haemorrhage. METHODS: Fatigue was assessed with the Fatigue Severity Scale, participation (frequency, restrictions, satisfaction) with the Utrecht Scale for Evaluation of Rehabilitation-Participation, healthrelated quality of life with the Stroke-Specific Quality of Life Scale-12, symptoms of depression and anxiety with the Hospital Anxiety and Depression Scale, and coping with the Coping Inventory for Stressful Situations. RESULTS: A total of 46 patients were included (63% men, mean age 50.4 ± 9.4 years), with a mean time of 4.7 ± 1.6 years after perimesencephalic subarachnoid haemorrhage onset. Fatigued patients (33%) had worse participation (p < 0.01) and health-related quality of life (p < 0.001) than non-fatigued patients, and more often had hypertension, depression, anxiety and emotion-oriented coping (p < 0.05). Fatigue severity was inversely and independently (p < 0.005) associated with participation frequency (B = -3.62), satisfaction (B = -4.54), having restrictions (odds ratio = 2.48, 95% confidence interval 1.079-5.685), and health-related quality of life (B = -0.19), adjusted for depression, anxiety, and/or hypertension. CONCLUSION: Five years after perimesencephalic subarachnoid haemorrhage, one-third of patients still reported fatigue, which was associated with worse participation and health-related quality of life. Future studies should examine whether these patients may benefit from rehabilitation aimed at fatigue.


Assuntos
Hipertensão , Hemorragia Subaracnóidea , Adulto , Estudos Transversais , Depressão/etiologia , Fadiga/etiologia , Feminino , Humanos , Hipertensão/complicações , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Hemorragia Subaracnóidea/complicações
3.
J Neurol ; 2022 Feb 07.
Artigo em Inglês | MEDLINE | ID: mdl-35129626

RESUMO

BACKGROUND: Home-monitoring of spirometry has the potential to improve care for patients with a motor neuron disease (MND) by enabling early detection of respiratory dysfunction and reducing travel burden. Our aim was to evaluate the validity and feasibility of home-monitoring vital capacity (VC) in patients with MND. METHODS: We included 33 patients with amyotrophic lateral sclerosis, progressive muscular atrophy or primary lateral sclerosis who completed a 12-week home-monitoring protocol, consisting of 4-weekly unsupervised home assessments of VC and a functional rating scale. At baseline, during a home visit, patients/caregivers were trained in performing a VC test, and the investigator performed a supervised VC test, which was repeated at final follow-up during a second home visit. Validity of the unsupervised VC tests was evaluated by the differences between supervised and unsupervised VC tests, and through Bland-Altman 95% limits-of-agreement. Feasibility was assessed by means of a survey of user-experiences. RESULTS: The 95% limits-of-agreement were [- 14.3; 11.7] %predicted VC, and 88% of unsupervised VC tests fell within 10%predicted of supervised VC. 88% of patients experienced VC testing as easy and not burdensome, however, 15% patients did not think their VC test was performed as well as in the clinic. 94% of patients would like home-monitoring of VC in MND care. DISCUSSION: Unsupervised VC testing at home, with prior face-to-face training, is a valid and time-efficient method for the remote monitoring of respiratory function, and well-accepted by patients with MND and their caregivers.

4.
Neuropsychol Rehabil ; 32(4): 499-519, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-33138703

RESUMO

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.


Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Realidade Virtual , Estudos Transversais , Estudos de Viabilidade , Humanos , Testes Neuropsicológicos , Acidente Vascular Cerebral/complicações , Interface Usuário-Computador
5.
Disabil Rehabil ; 44(3): 458-467, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32530772

RESUMO

PURPOSE: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1-8 years) with CP. MATERIALS AND METHODS: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs. RESULTS: In total, sixteen themes were identified across the three domains. Within the families' Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep. CONCLUSIONS: Parents face numerous challenges caring for their child's sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.IMPLICATIONS FOR REHABILITATIONThe heavy burden placed on families by sleep problems in children with cerebral palsy warrants acknowledgement in paediatric healthcare.Sleep should be routinely addressed by clinicians during health assessments using a family-centered, and multidisciplinary approach.Healthcare professionals ought to adopt a proactive, understanding, and non-judgmental attitude when addressing sleep problems.Future research should focus on developing sleep intervention strategies that take into account the diverse parental concerns and needs unique to each family situation.


Assuntos
Paralisia Cerebral , Paralisia Cerebral/complicações , Paralisia Cerebral/reabilitação , Criança , Pré-Escolar , Família , Humanos , Lactente , Pais , Pesquisa Qualitativa , Sono
6.
Brain Sci ; 11(12)2021 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-34942899

RESUMO

The ENCALS survival prediction model offers patients with amyotrophic lateral sclerosis (ALS) the opportunity to receive a personalized prognosis of survival at the time of diagnosis. We explored experiences of patients with ALS, caregivers, and physicians with discussing personalized prognosis through interviews with patients and their caregivers, and in a focus group of physicians. Thematic analysis revealed four themes with seven subthemes; these were recognized by the focus group. First, tailored communication: physician's communication style and information provision mediated emotional impact and increased satisfaction with communication. Second, personal factors: coping style, illness experiences, and information needs affected patient and caregiver coping with the prognosis. Third, emotional impact ranged from happy and reassuring to regret. Fourth, regaining control over the future: participants found it helpful in looking towards the future, and emphasized the importance of quality over quantity of life. Personalized prognosis can be discussed with minimal adverse emotional impact. How it is communicated-i.e., tailored to individual needs-is as important as what is communicated-i.e., a good or poor prognosis. Discussing personalized prognosis may help patients with ALS and their caregivers regain control over the future and facilitate planning of the future (care). For many patients, quality of life matters more than quantity of time remaining.

7.
Artigo em Inglês | MEDLINE | ID: mdl-34949141

RESUMO

Objective: Uniform data collection is fundamental for multicentre clinical trials. We aim to determine the variability, between ALS trial centers, in the prevalence of unexpected or implausible improvements in the revised ALS functional rating scale (ALSFRS-R) score, and its associations with individual patient and item characteristics.Methods: We used data from two multicentre studies to estimate the prevalence of an unexpected increase or implausible improvement in the ALSFRS-R score, defined as an increase of 5 points or more between two consecutive, monthly visits. For each patient with a 5-point or more increase, we evaluated the individual contribution of each ALSFRS-R item.Results: Longitudinal ALSFRS-R scores, originating from 114 trial centers enrolling a total of 1,240 patients, were analyzed. A 5-point or more increase in ALSFRS-R total score was found in 151 (12.2%) patients, with prevalence per study center ranging from 0% to 83%. Bulbar onset, faster disease progression at enrollment, and a lower ALSFRS-R score at baseline were associated with a sudden 5-point or more increase in the ALSFRS-R total score. ALSFRS-R items 2 (saliva), 9 (stairs), 10 (dyspnea), and 11 (orthopnea) were the primary drivers when a 5-point or more increase occurred.Conclusions: Sudden 5-point or more increases in ALSFRS-R total scores between two consecutive visits are relatively common. These sudden increases were not found to occur with equal frequency in trial centers; which underscores the need for amending existing standard operating procedures toward a universal version and monitoring of data quality during the study, in multicentre research.

8.
J Stroke Cerebrovasc Dis ; 30(11): 106081, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34507257

RESUMO

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.


Assuntos
Participação da Comunidade , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Caminhada , Participação da Comunidade/estatística & dados numéricos , Estudos Transversais , Humanos , Acidente Vascular Cerebral/fisiopatologia , Caminhada/fisiologia
9.
Artigo em Inglês | MEDLINE | ID: mdl-34486902

RESUMO

OBJECTIVE: To describe current practices and barriers and support needs in gastrostomy indication and decision-making amongst rehabilitation physicians of ALS care teams in the Netherlands. Methods: Cross-sectional online survey of rehabilitation physicians of ALS care teams in the Netherlands. Survey items covered current practices in timing of indication (i.e. indicators and criteria), goals, initiating discussion about gastrostomy, and criteria for preferred method of placement; and barriers and support needs in indication and decision-making. Descriptive analysis was used for quantitative responses, thematic, and content analysis for qualitative data. Results: Twenty-nine physicians (41%) of 27 ALS care teams (71%) responded. Timing of indication: physicians agreed on important indicators but not cutoff values/criteria. Goals: optimizing nutritional status (100%), ensuring safe food-intake (72%), and reducing effort of meals (59%). Initiating discussion about gastrostomy: 52% introduces the topic early after diagnosis, 48% at indication. Criteria for method of placement included physician preference (69%), availability of service (21%), lower complication risk (17%), contraindication (59%), and patient preference (24%). Reported barriers (69% of respondents) were: patient readiness (52%), timing of indication (31%), and organizational barriers (18%). Support needs (62%): evidence-based timing of indication (35%) and tailored patient education (31%). Conclusions: There is practice variation in the timing of first introduction of gastrostomy and preferred method of placement, but agreement on goals and indicators . More evidence on optimal timing of gastrostomy placement is needed. However, until then early and regular discussion of the topic of gastrostomy and better patient information may promote patient readiness and support patient choice.

10.
Int J Lang Commun Disord ; 56(6): 1190-1203, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34370352

RESUMO

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.


Assuntos
Afasia , Comunicação , Atenção à Saúde , Pessoal de Saúde , Humanos , Aprendizagem
11.
Top Stroke Rehabil ; : 1-10, 2021 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-34315356

RESUMO

BACKGROUND: The Utrecht Scale for Evaluation of Rehabilitation-Participation Restrictions scale (USER-P-R) is a promising patient-reported outcome measure, but has currently not been validated in a hospital-based stroke population. OBJECTIVE: To examine psychometric properties of the USER-P-R in a hospital-based stroke population 3 months after stroke onset. METHODS: Cross-sectional study including 359 individuals with stroke recruited through 6 Dutch hospitals. The USER-P-R, EuroQol 5-dimensional 5-level questionnaire (EQ-5D-5 L), Patient Reported Outcomes Measurement Information System 10-Question Global Health Short Form (PROMIS-10), modified Rankin Scale (mRS) and two items on perceived decrease in health and activities post-stroke were administered in a telephone interview 3 months after stroke. The internal consistency, distribution, floor/ceiling effects, convergent validity and discriminant ability of the USER-P-R were calculated. RESULTS: Of all participants, 96.9% were living at home and 50.9% experienced no or minimal disabilities (mRS 0-1). The USER-P-R showed high internal consistency (α = 0.90) and a non-normal left-skewed distribution with a ceiling effect (21.4% maximum scores). A substantial proportion of participants with minimal disabilities (mRS 1) experienced restrictions on USER-P-R items (range 11.9-48.5%). The USER-P-R correlated strongly with the EQ-5D-5 L, PROMIS-10 and mRS. The USER-P-R showed excellent discriminant ability in more severely affected individuals with stroke, whereas its discriminant ability in less affected individuals was moderate. CONCLUSIONS: The USER-P-R shows good measurement properties and provides additional patient-reported information, proving its usefulness as an instrument to evaluate participation after 3 months in a hospital-based stroke population.

12.
PLoS One ; 16(7): e0249886, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34242235

RESUMO

BACKGROUND: Cognitive performances on neuropsychological paper-and-pencil tests are generally evaluated quantitatively by examining a final score (e.g., total duration). Digital tests allow for a quantitative evaluation of "how" a patient attained a final score, which opens the possibility to assess more subtle cognitive impairment even when final scores are evaluated as normal. We assessed performance stability (i.e., the number of fluctuations in test performance) to investigate (1) differences in performance stability between patients with acquired brain injury (ABI) and healthy controls; (2) the added value of performance stability measures in patients with ABI; and (3) the relation between performance stability and cognitive complaints in daily life in patients with ABI. METHODS: We administered three digital neuropsychological tests (Rey Auditory Verbal Learning Test, Trail Making Test, Stroop Colour and Word Test) and the Cognitive Complaints-Participation (CoCo-P) inventory in patients with ABI (n = 161) and healthy controls (n = 91). RESULTS: Patients with ABI fluctuated more in their performance on all tests, when compared to healthy controls. Furthermore, 4-15% of patients who performed inside normal range on the conventional final scores were outside normal range on the performance stability measures. The performance stability measures, nor the conventional final scores, were associated with cognitive complaints in daily life. CONCLUSIONS: Stability in test performance of patients was clearly dissociable from healthy controls, and may assess additional cognitive weaknesses which might not be observed or objectified with paper-and-pencil tests. More research is needed for developing measures better associated with cognitive complaints.


Assuntos
Lesões Encefálicas/psicologia , Testes Neuropsicológicos , Adulto , Humanos , Masculino , Pessoa de Meia-Idade , Teste de Sequência Alfanumérica
13.
J Rehabil Med ; 53(6): jrm00205, 2021 Jun 08.
Artigo em Inglês | MEDLINE | ID: mdl-33948672

RESUMO

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.


Assuntos
Transtornos Cognitivos , Acidente Vascular Cerebral/complicações , Idoso , Transtornos Cognitivos/epidemiologia , Transtornos Cognitivos/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Fatores de Tempo
14.
Dev Med Child Neurol ; 63(11): 1344-1350, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-33990937

RESUMO

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.


Assuntos
Paralisia Cerebral/complicações , Pais , Transtornos do Sono-Vigília/complicações , Paralisia Cerebral/fisiopatologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Transtornos do Sono-Vigília/fisiopatologia
15.
Stroke ; 52(6): 1983-1992, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33966494

RESUMO

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.


Assuntos
Transtornos Cognitivos , Cognição , Imagem de Difusão por Ressonância Magnética , Hospitalização , Acidente Vascular Cerebral , Idoso , Transtornos Cognitivos/diagnóstico por imagem , Transtornos Cognitivos/etiologia , Transtornos Cognitivos/fisiopatologia , Transtornos Cognitivos/terapia , Feminino , Humanos , Masculino , Estudos Prospectivos , Recuperação de Função Fisiológica , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/diagnóstico por imagem , Acidente Vascular Cerebral/fisiopatologia , Acidente Vascular Cerebral/terapia
16.
Neurooncol Pract ; 8(2): 160-170, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33898049

RESUMO

BACKGROUND: Cognitive deficits have been frequently assessed in brain tumor patients. However, self-reported cognitive complaints have received little attention so far. Cognitive complaints are important as they often interfere with participation in society. In this study, cognitive complaints were systematically assessed in brain tumor patients. As patients' experiences and relatives' estimations may vary, the level of agreement was investigated. METHODS: Brain tumor outpatients (n = 47) and relatives (n = 42) completed the inventory Cognitive Complaints-Participation, assessing cognitive complaints across 10 daily life activities and cognitive domains (total, memory, executive, attention). Cognitive complaints scores were compared between patients with different clinical characteristics (tumor type, number of treatments, the absence/presence of epilepsy). Complaints difference scores in patient-relative pairs were calculated to explore the level of agreement using intraclass correlations (ICC). Furthermore, we explored whether the level of agreement was related to (1) the magnitude of cognitive complaints in patient-relative pairs and (2) patients' cognitive functioning (assessed with the Montreal Cognitive Assessment). RESULTS: Patients and relatives reported most cognitive complaints during work/education (100%) and social contacts (88.1%). Patients with different clinical characteristics reported comparable cognitive complaints scores. Overall, the level of agreement in patient-relative pairs was moderate-good (ICC 0.73-0.86). Although in 24% of the pairs, there was a substantial disagreement. The level of agreement was not related to the magnitude of complaints in patient-relative pairs or patients' cognitive functioning. CONCLUSION: Both the perspectives of brain tumor patients and their relatives' on cognitive complaints are important. Clinicians could encourage communication to reach mutual understanding.

17.
Disabil Rehabil ; : 1-10, 2021 Apr 19.
Artigo em Inglês | MEDLINE | ID: mdl-33874820

RESUMO

PURPOSE: To evaluate the effects of a combination of wheelchair mobility skills (WMS) training and exercise training on physical activity (PA), WMS, confidence in wheelchair mobility, and physical fitness. METHODS: Youth using a manual wheelchair (n = 60) participated in this practice-based intervention, with a waiting list period (16 weeks), exercise training (8 weeks), WMS training (8 weeks), and follow-up (16 weeks). Repeated measures included: PA (Activ8), WMS (Utrecht Pediatric Wheelchair Mobility Skills Test), confidence in wheelchair mobility (Wheelchair Mobility Confidence Scale), and physical fitness (cardiorespiratory fitness, (an)aerobic performance) and were analysed per outcome parameter using a multilevel model analyses. Differences between the waiting list and training period were determined with an unpaired sample t-test. RESULTS: Multilevel model analysis showed significant positive effects for PA (p = 0.01), WMS (p < 0.001), confidence in wheelchair mobility (p < 0.001), aerobic (p < 0.001), and anaerobic performance (p < 0.001). Unpaired sample t-tests underscored these effects for PA (p < 0.01) and WMS (p < 0.001). There were no effects on cardiorespiratory fitness. The order of training (exercise before WMS) had a significant effect on confidence in wheelchair mobility. CONCLUSIONS: A combination of exercise and WMS training appears to have significant positive long-term effects on PA, WMS, confidence in wheelchair mobility, and (an)aerobic performance in youth using a manual wheelchair.Implications for rehabilitationExercise training and wheelchair mobility skills (WMS) training can lead to a sustained improvement in physical activity (PA) in youth using a manual wheelchair.These combined trainings can also lead to a sustained increase in WMS, confidence in wheelchair mobility, and (an)aerobic performance.More attention is needed in clinical practice and in research towards improving PA in youth using a manual wheelchair.

18.
Neurorehabil Neural Repair ; 35(5): 457-467, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33825580

RESUMO

BACKGROUND: Assessment of skilled reaching enables extensive analysis of upper limb function in clinical and preclinical studies on poststroke outcome. However, translational research if often limited by lack of correspondence between tests of human and rodent motor function. OBJECTIVES: To determine (1) the translational value of skilled reaching performance for preclinical research by comparing the behavioral recovery profiles of skilled reaching characteristics between humans and rats recovering from stroke and (2) the relationship between skilled reaching performance and commonly used clinical outcome measures after stroke. METHODS: Twelve patients with ischemic or hemorrhagic stroke and 17 rats with photothrombotic stroke underwent an equivalent skilled reaching test at different time points, representing early to late subacute stages poststroke. Success scores and a movement element rating scale were used to measure the skilled reaching performance. The Fugl-Meyer Upper Extremity (FM-UE) assessment and the Action Research Arm Test (ARAT) were used as clinical outcome measures. RESULTS: Both species had muscle flaccidity at the early subacute stage after stroke and showed motor recovery following a proximal-distal principle toward the early subacute stage, albeit for rats within a shorter time course. Human skilled reaching scores and FM-UE and ARAT scores in the first 3 months poststroke were significantly correlated (P < .05). CONCLUSIONS: Our study demonstrates that poststroke changes in skilled reaching performance are highly similar between rats and humans and correspond with standard clinical outcome measures. Skilled reaching testing therefore offers an effective and highly translational means for assessment of motor recovery in experimental and clinical stroke settings.


Assuntos
Atividade Motora , Avaliação de Resultados em Cuidados de Saúde , Desempenho Psicomotor , Recuperação de Função Fisiológica , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral/terapia , Extremidade Superior , Idoso , Animais , Comportamento Animal/fisiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Atividade Motora/fisiologia , Desempenho Psicomotor/fisiologia , Ratos , Ratos Sprague-Dawley , Recuperação de Função Fisiológica/fisiologia , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/fisiopatologia , Extremidade Superior/fisiopatologia
19.
Psychooncology ; 30(5): 635-648, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33533166

RESUMO

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.


Assuntos
Neoplasias da Mama , Disfunção Cognitiva , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/epidemiologia , Disfunção Cognitiva/epidemiologia , Feminino , Humanos , Estudos Longitudinais , Prevalência , Qualidade de Vida
20.
Disabil Rehabil ; : 1-8, 2021 Feb 02.
Artigo em Inglês | MEDLINE | ID: mdl-33529542

RESUMO

PURPOSE: Aphasia after stroke has been shown to lead to communication difficulties between healthcare professionals (HCP) and people with aphasia. Clinical guidelines emphasize the importance of teaching HCP to use supportive conversative techniques through communication partner training (CPT). The aim of this study is to explore and describe the experiences of HCP in communicating with people with aphasia and their needs and wishes for the content in CPT. MATERIALS AND METHODS: The data were collected through qualitative semi-structured interviews with 17 HCP. HCP were recruited from two geriatric rehabilitation centres in the Netherlands and one academic hospital in Belgium. The interviews drew upon the qualitative research methodologies ethnography and phenomenology and were thematically analysed using the six steps of Braun & Clarke. RESULTS: Three themes were derived from the interviews. HCP experienced that communication difficulties impede healthcare activities (theme 1) and reported the need to improve communication through organizational changes (theme 2), changing the roles of SLTs (theme 3) and increasing knowledge and skills of HCP (theme 4). CONCLUSIONS: According to HCP, communication difficulties challenge the provision of healthcare activities and lead to negative feelings in HCP. HCP suggest that communication can be improved by providing more time in the healthcare pathway of people with aphasia, adapting healthcare information to the needs of people with aphasia, commitment of physicians and managers, changing the roles of SLTs and improving knowledge and skills of HCP.Implications for rehabilitationCommunication between healthcare professionals (HCP) and people with aphasia can be improved by training HCP to use supportive conversation techniques and tools.An important condition for successful implementation of communication partner trainings in healthcare centres is to identify the experiences of HCP with communication with people with aphasia and their needs and wishes for training content.This study shows that communication problems between HCP and people with aphasia impede diagnosis and therapy with considerable implications for healthcare quality.The suggestions that HCP have concerning the content of communication partner trainings can be placed under "education" and "implementation and post-training support." HCP describe specific roles for speech-and language therapists to fulfil after the training and suggest two main changes that should be made at an organizational level.

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