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1.
J Patient Rep Outcomes ; 8(1): 46, 2024 Apr 26.
Article in English | MEDLINE | ID: mdl-38668901

ABSTRACT

BACKGROUND: Patient Reported Outcomes Measures (PROMs) are being used increasingly to measure health problems in stroke clinical practice. However, the implementation of these PROMs in routine stroke care is still in its infancy. To understand the value of PROMs used in ischemic stroke care, we explored the patients' experience with PROMs and with the consultation at routine post-discharge follow-up after stroke. METHODS: In this prospective mixed methods study, patients with ischemic stroke completed an evaluation questionnaire about the use of PROMs and about their consultation in two Dutch hospitals. Additionally, telephone interviews were held to gain in-depth information about their experience with PROMs. RESULTS: In total, 63 patients completed the evaluation questionnaire of which 10 patients were also interviewed. Most patients (82.2-96.6%) found completing the PROMs to be feasible and relevant. Half the patients (49.2-51.6%) considered the PROMs useful for the consultation and most patients (87.3-96.8%) reported the consultation as a positive experience. Completing the PROMs provided 51.6% of the patients with insight into their stroke-related problems. Almost 75% of the patients found the PROMs useful in giving the healthcare provider greater insight, and 60% reported discussing the PROM results during the consultation. Interviewed patients reported the added value of PROMs, particularly when arranging further care, in gaining a broader insight into the problems, and in ensuring all important topics were discussed during the consultation. CONCLUSIONS: Completing PROMs appears to be feasible for patients with stroke attending post-discharge consultation; the vast majority of patients experienced added value for themselves or the healthcare provider. We recommend that healthcare providers discuss the PROM results with their patients to improve the value of PROMs for the patient. This could also improve the willingness to complete PROMs in the future.


Subject(s)
Patient Discharge , Patient Reported Outcome Measures , Humans , Female , Male , Prospective Studies , Aged , Middle Aged , Netherlands , Surveys and Questionnaires , Stroke/therapy , Stroke/psychology , Follow-Up Studies , Patient Satisfaction , Aged, 80 and over , Interviews as Topic , Stroke Rehabilitation/methods
2.
Disabil Rehabil ; : 1-8, 2023 Aug 30.
Article in English | MEDLINE | ID: mdl-37649314

ABSTRACT

PURPOSE: Sensory hypersensitivity is a frequently reported complaint after acquired brain injury (ABI). This study explores patients' perceptions of sensory hypersensitivity following ABI and its impact on everyday life. MATERIALS AND METHODS: Semi-structured interviews were conducted with 18 patients with ABI (stroke, brain tumour, TBI) who reported complaints of sensory hypersensitivity. Interview data were analysed using qualitative thematic analysis. RESULTS: Six themes emerged from the data: (1) definition of sensory hypersensitivity, relating to individual perceptions of sensory hypersensitivity; (2) type of sensory stimuli, relating to the variety of stimuli that patients may be sensitive to; (3) course, relating to changes in sensory hypersensitivity following ABI; (4) fatigue, relating to its association with sensory hypersensitivity; (5) consequences of sensory hypersensitivity, relating to the physical, social and emotional impact of sensory hypersensitivity on patients' lives; and (6) coping strategies, relating to behaviours used to cope with sensory hypersensitivity. CONCLUSIONS: Sensory hypersensitivity can have a major impact on patients' physical well-being, return to work and (social) participation after ABI. Characteristics of sensory hypersensitivity vary between patients with ABI. To develop treatments for sensory hypersensitivity, future studies should focus on cognitive (e.g., filtering information) and psychological factors (e.g., coping) in relation to sensory hypersensitivity.


Sensory hypersensitivity occurs in all types of acquired brain injury (ABI).It is important to ask an ABI patient how sensory hypersensitivity is experienced.It is recommended to investigate the physical (e.g., headache) and emotional (e.g., irritability, anger, frustration) consequences of sensory hypersensitivity and its impact on return to work and social participation.When the patient mentions sensory hypersensitivity, also map cognition (with a focus on attention), fatigue, stress, and coping.

3.
Disabil Rehabil ; 45(12): 2038-2045, 2023 06.
Article in English | MEDLINE | ID: mdl-35672153

ABSTRACT

PURPOSE: To develop and explore underlying dimensions of the Self-Regulation Assessment (SeRA) and psychometric features of potential components. Further, to identify associations between the SeRA and disability-management self-efficacy, type of diagnosis, and type of rehabilitation. MATERIALS AND METHODS: Based on a previously developed model of self-regulation, expert and patient opinions, and cognitive interviews, a list of 22 items on self-regulation (the SeRA) was constructed. The SeRA was included in a cross-sectional survey among a multi-diagnostic group of 563 former rehabilitation patients. Exploratory analyses were conducted. RESULTS: Respondents had a mean age of 56.5 (SD 12.7) years. The largest diagnostic groups were chronic pain disorder and brain injury. Four components were found within the SeRA, labelled as "insight into own health condition," "insight into own capabilities," "apply self-regulation," and "organization of help." Cronbach's alpha was high (total scale: 0.93, subscales: range 0.85-0.89). Only scores on the first subscale showed a ceiling effect. Subscale three showed the highest correlation with a self-efficacy measure. Small differences in SeRA total scores (range 71.6-78.1) were found between different diagnostic groups. CONCLUSION: The SeRA is a new self-regulation measure with four subscales. Further research is needed to establish the validity and reliability of the SeRA. IMPLICATIONS FOR REHABILITATIONThe Self-Regulation Assessment (SeRA) was developed to provide a comprehensive measurement of self-regulation among rehabilitation populations.The SeRA could potentially be used to identify persons with self-regulation problems at the start of rehabilitation treatment and measure outcomes of rehabilitation for self-regulation.The SeRA could potentially be used to help analyse outcomes of rehabilitation practice as well as evaluate interventions on self-regulation.


Subject(s)
Patient Reported Outcome Measures , Self-Control , Humans , Middle Aged , Cross-Sectional Studies , Reproducibility of Results , Surveys and Questionnaires , Psychometrics/methods
4.
Neuropsychol Rehabil ; 33(5): 849-870, 2023 Jun.
Article in English | MEDLINE | ID: mdl-35297736

ABSTRACT

Many stroke patients and partners suffer from anxiety, depression, and low life satisfaction. Psychological factors such as coping style and self-efficacy can be protective factors within individuals. The close relationship between stroke patients and partners suggests that there may be interdependence in psychological functioning. The aim of this study was to examine intra- and interpersonal effects of coping style and self-efficacy on anxiety, depression, and life satisfaction in patient-partners couples. In this prospective cohort study, pro-active coping (UPCC), general self-efficacy (GSES), anxiety (HADS-A), depression (HADS-D), and life satisfaction (1-6 scale) were assessed in 215 couples at 2 and 12 months post-stroke. Effects within couples were assessed using structural equation modelling. Several intra- and interpersonal effects of coping style and self-efficacy at 2 months post-stroke were related to emotional health at 12 months post-stroke. Most effects were intrapersonal effects. The interpersonal effects were small but showed that pro-active coping by the patient was associated with lower anxiety of the partner. Higher self-efficacy of the partner was associated with lower depression scores and higher life satisfaction of the patient. This study underscores the importance of a dyadic approach to post-stroke functioning. It supports a family-based approach for treating post-stroke emotional problems.


Subject(s)
Depression , Stroke , Humans , Depression/etiology , Depression/psychology , Self Efficacy , Prospective Studies , Patient Satisfaction , Adaptation, Psychological , Anxiety/etiology , Anxiety/psychology , Stroke/complications , Stroke/psychology , Personal Satisfaction , Interpersonal Relations
5.
BMC Health Serv Res ; 22(1): 1389, 2022 Nov 22.
Article in English | MEDLINE | ID: mdl-36419109

ABSTRACT

BACKGROUND: To improve the care for patients with motor neuron disease an e-health innovation for continuous monitoring of disease progression and patients' well-being (ALS H&C) was implemented in 10 multidisciplinary rehabilitation settings. The first aim was to evaluate the implementation of ALS H&C by assessing several implementation outcomes, technology acceptance and usability of the innovation according to the end users. The secondary aim was to explore differences in these outcomes between the teams with sustainable and unsustainable implementation. METHODS: The chosen implementation strategy was a combination of the implementation process model by Grol & Wensing and a participatory action research approach. In three meetings with multidisciplinary project groups the innovation was introduced, the expected barriers/facilitators identified, and action plans to resolve each barrier developed. After a 3-month pilot phase, patients and their healthcare providers were asked to complete an online evaluation survey to assess implementation outcomes, based on Proctor's evaluation framework (i.e., acceptability, feasibility, fidelity, sustainability). Telemedicine technology acceptance was assessed according the technology acceptance model of Chau, and user experiences with the System Usability Scale (SUS). Implementation outcomes of teams with sustainable implementation (continuation after completion of the pilot phase) and unsustainable implementation (discontinuation after the pilot phase) were compared. RESULTS: The implementation outcomes from the patients' perspective (N = 71) were positive; they found ALS H&C to be an acceptable and feasible care concept. Patients' technology acceptance was high, with positive attitudes towards ALS H&C, and positive views on perceived technology control, usefulness, and ease of use. Patients rated their satisfaction with the (web) app on a scale from 1 (not satisfied at all) to 10 (very satisfied) with a 7.0 (median; IQR 1.0). Healthcare providers (N = 76) also found ALS H&C acceptable and appropriate as well, but were less positive about the feasibility and usability of ALS H&C (mean SUS 58.8 [SD 11.3]). ALS H&C has largely been implemented as intended and the implementation was sustainable in 7 teams. Teams who discontinued ALS H&C after the pilot phase (N = 2) had more fidelity issues. CONCLUSIONS: A participatory action research approach supported by theoretical approaches used in implementation science led to a sustainable implementation of ALS H&C in 7 of the participating teams. To improve implementation success, additional implementation strategies to increase feasibility, usability and fidelity are necessary. TRIAL REGISTRATION: Trial NL8542 registered at Netherlands Trial Register (trialregister.nl) on 15th April 2020.


Subject(s)
Amyotrophic Lateral Sclerosis , Home Care Services , Telemedicine , Humans , Amyotrophic Lateral Sclerosis/therapy , Mentoring/methods , Technology , Telemedicine/organization & administration , Home Care Services/organization & administration , Monitoring, Physiologic/methods , Patient Acceptance of Health Care
6.
Disabil Rehabil ; 44(10): 1855-1862, 2022 05.
Article in English | MEDLINE | ID: mdl-32866072

ABSTRACT

PURPOSE: (1) To explore the course of participation from two months up to four years after stroke, and (2) to examine if adaptive and maladaptive psychological factors and mood measured at two months after stroke are determinants of the course of participation during this period. MATERIALS AND METHODS: Prospective cohort study in which 369 individuals with stroke were assessed at stroke onset, two months, six months, one year, two years and three to four years after stroke. The Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) restrictions subscale was used to measure participation. Psychological factors were clustered into adaptive (proactive coping, self-efficacy, extraversion and optimism) and maladaptive (passive coping, neuroticism and pessimism) psychological factors. The Hospital Anxiety and Depression Scale was used to assess mood. RESULTS: Although improvements in participation were observed up to one year after stroke, considerable long-term restrictions in social and physical domains persisted. More mood problems and less adaptive psychological factors were independent determinants of worse participation up to four years after stroke. CONCLUSIONS: Participation improves in the first 12 months after stroke and stabilizes afterwards. Mood problems and less adaptive psychological factors negatively influence the course of participation over time up to four years after stroke.Implications for rehabilitationFollow-up assessments after stroke should not only focus on cognitive and motor impairment, but also encompass screening on mood problems and adaptive psychological factors.Implementation of a routine follow-up assessment one year after stroke can be beneficial as restrictions in participation are unlikely to diminish spontaneously from then onwards.


Subject(s)
Stroke Rehabilitation , Stroke , Adaptation, Psychological , Affect , Depression/psychology , Humans , Prospective Studies , Stroke/psychology , Stroke Rehabilitation/psychology
7.
Neuropsychol Rehabil ; 32(7): 1405-1428, 2022 Aug.
Article in English | MEDLINE | ID: mdl-33715586

ABSTRACT

The ability to travel independently is a vital part of an autonomous life. It is important to investigate to what degree people with acquired brain injuries (ABI) suffer from navigation impairments. The aim of this study was to investigate the prevalence and characteristics of objective and subjective navigation impairments in the population of ABI patients. A large-scale online navigation study was conducted with 435 ABI patients and 7474 healthy controls. Participants studied a route through a virtual environment and completed 5 navigation tasks that assessed distinct functional components of navigation ability. Subjective navigation abilities were assessed using the Wayfinding questionnaire. Patients were matched to controls using propensity score matching. Overall, performance on objective navigation tasks was significantly lower in the ABI population compared to the healthy controls. The landmark recognition, route continuation and allocentric location knowledge tasks were most vulnerable to brain injury. The prevalence of subjective navigation impairments was higher in the ABI population compared to the healthy controls. In conclusion, a substantial proportion (39.1%) of the ABI population reports navigation impairments. We advocate the evaluation of objective and subjective navigation ability in neuropsychological assessments of ABI patients.


Subject(s)
Brain Injuries , Spatial Navigation , Humans , Neuropsychological Tests , Recognition, Psychology , Surveys and Questionnaires
8.
Disabil Rehabil ; 44(24): 7484-7490, 2022 12.
Article in English | MEDLINE | ID: mdl-34747280

ABSTRACT

PURPOSE: Self-regulation refers to self-management and self-control, with or without disability. Outcomes of rehabilitation with respect to self-regulation are unclear. This study aims to identify elements of self-regulation that former patients consider important in the context of medical rehabilitation. MATERIALS AND METHODS: Qualitative exploration based on focus group discussions (FGDs). Transcripts were analysed using thematic analysis as well as open coding. Forty individuals participated in seven diagnosis-related FGDs. RESULTS: Six subthemes were raised in the FGDs which could be merged into three main themes. Two main themes are conditional for regaining self-regulation: 1) having insight into one's condition and abilities (i.e., insight into impairments. consequences of impairments. abilities); 2) to know how to cope with the consequences of the condition (be able to communicate limitations; have to trust in body and functioning). The subject of the last theme 3) is how to apply self-regulation in one's own life (to make use of abilities and optimize functioning). CONCLUSIONS: Three main themes of self-regulation in the context of medical rehabilitation were identified by former patients, partly relating to the ability to self-regulate and partly to the execution of self-regulation. This knowledge can be used to define specific rehabilitation goals and further develop rehabilitation outcome measurement.IMPLICATIONS FOR REHABILITATIONAwareness of the fundamental subthemes of self-regulation in rehabilitation will positively contribute to theory building and improve clinical practice (e.g., goal setting).Paying explicit attention to the six subthemes as standard elements of rehabilitation will help to provide a comprehensive view concerning self-regulation.The conceptual model of self-regulation, based on patient perspectives, can contribute to the measurement of rehabilitation outcomes.


Subject(s)
Disabled Persons , Self-Control , Humans , Disabled Persons/rehabilitation , Focus Groups , Treatment Outcome
9.
Implement Sci Commun ; 2(1): 25, 2021 Feb 25.
Article in English | MEDLINE | ID: mdl-33632340

ABSTRACT

BACKGROUND: In the absence of a cure for amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease, treatment consists of symptomatic management by a multidisciplinary healthcare team and is mainly aimed at optimizing patients' quality of life. Because the course of the disease is often erratic and varies between patients, it is imperative for patients with ALS to be closely monitored. E-health innovations that can monitor disease progression remotely have great potential to tailor the care to the needs of individual patients with ALS. Therefore, the e-health innovation "ALS Home-monitoring and Coaching" was developed employing a user-centered design process and implemented at the University Medical Center Utrecht, the Netherlands in 2017. Because ALS Home-monitoring and Coaching was shown to be feasible and well received by patients and healthcare professionals at University Medical Centre Utrecht, we aim to implement this e-health innovation nationwide, starting with 10 ALS care teams in different rehabilitation settings spread across the Netherlands. METHODS: This research focuses on the implementation process and the user experiences with ALS Home-monitoring and Coaching of both patients and healthcare professionals. We will use a participatory action research approach, with the stakeholders involved in all stages of the implementation process. The implementation process model of Grol and Wensing was used to structure and support planning, execution and evaluation of the implementation strategy. The expected barriers and facilitators will be explored and identified in focus group settings using the Theoretical Domains Framework. After that, each team will develop their own action plan with strategies for how to resolve each barrier. The teams will include 5-10 ALS patients with whom they will test their implementation plan and provide care with ALS Home-monitoring and Coaching for approximately 3 months. Afterwards, the implementation and the user experiences will be evaluated with digital surveys based on the evaluation framework of Proctor (e.g., acceptability, adoption, appropriateness). DISCUSSION: Using implementation theories, this study will provide inside in factors influencing implementation outcomes and strategies that can be used to overcome barriers. This will enhance our understanding of how to successfully implement e-health innovations in multidisciplinary care in rehabilitation settings. TRIAL REGISTRATION: Trial NL8542 registered at Netherlands Trial Register (trialregister.nl) on 15th April 2020.

10.
Psychol Res ; 85(6): 2137-2150, 2021 Sep.
Article in English | MEDLINE | ID: mdl-32772158

ABSTRACT

As we become familiar with an environment through navigation and map study, spatial information is encoded into a mental representation of space. It is currently unclear to what degree mental representations of space are determined by the perspective in which spatial information is acquired. The overlapping model of spatial knowledge argues that spatial information is encoded into a common spatial representation independent of learning perspective, whereas the partially independent model argues for dissociated spatial representations specific to the learning perspective. The goal of this study was to provide insight into this debate by investigating the cognitive functions underlying the formation of spatial knowledge obtained through different learning perspectives. Hundred participants studied an ecologically valid virtual environment via a first-person and map perspective. The map employed in the study was dynamic, allowing for the disentanglement of learning perspective and sequential information presentation. Spatial knowledge was examined using an array of navigation tasks that assessed both route and survey knowledge. Results show that distinct visuospatial abilities predict route knowledge depending on whether an environment is learned via a first-person or map perspective. Both shared and distinct visuospatial abilities predicted the formation of survey knowledge in the two perspective learning conditions. Additionally, sequential presentation of map information diminishes the perspective dependent performance differences on spatial tasks reported in earlier studies. Overall, the results provide further evidence for the partially dissociated model of spatial knowledge, as the perspective from which an environment is learned influences the spatial representation that is formed.


Subject(s)
Spatial Navigation , Cognition , Humans , Learning , Space Perception
11.
Neuropsychol Rehabil ; 31(8): 1207-1223, 2021 Sep.
Article in English | MEDLINE | ID: mdl-32496877

ABSTRACT

A variety of approaches are currently used to explore the relationship between cognitive functioning and participation after stroke. We aimed to gain insight into the preferred approach to measure cognitive functioning when exploring the association between cognitive functioning and participation in the long term after stroke. In this inception cohort study 128 individuals with stroke participated and were assessed at a single time point three to four years after the event. Participation was measured using the Restrictions subscale of the Utrecht Scale for Evaluation of Rehabilitation-Participation. Subjective cognitive complaints were assessed using the Cognition subscale of the Checklist for Cognitive and Emotional Consequences (CLCE-24-C). Objective cognitive performance was measured using the Montreal Cognitive Assessment (MoCA) and a neuropsychological test battery (NTB) testing multiple cognitive domains. Participation showed a strong correlation (r = 0.51) with the CLCE-24-C and moderate correlations with the domains of visuospatial perception (r = 0.37) and mental speed (r = 0.36). Backward linear regression analyses showed that participation restrictions were best explained by the combination of the CLCE-24-C and a test for visuospatial perception (R2 = 0.31). Our findings suggest the use of a combination of subjective cognitive complaints and objective cognitive performance to explore the relationship between cognitive functioning and participation after stroke.


Subject(s)
Stroke Rehabilitation , Stroke , Cognition , Cohort Studies , Humans , Neuropsychological Tests , Stroke/complications
13.
BMC Health Serv Res ; 20(1): 1049, 2020 Nov 17.
Article in English | MEDLINE | ID: mdl-33203405

ABSTRACT

BACKGROUND: Ischemic stroke patients with a good outcome in terms of motor functioning and communication are likely to be discharged home without further rehabilitation. A significant number of these patients experience cognitive and emotional problems resulting in lower quality of life and decreased participation in society. This paper presents the protocol of a study examining the clinical effectiveness, cost-effectiveness and implementation of an intervention focused on screening and patient-tailored care for cognitive and emotional problems as compared to usual care in patients discharged home after ischemic stroke. METHODS / DESIGN: A multicenter, patient-blinded, cluster randomized controlled trial will be performed. Centers will be randomized (1:1) to the intervention group or the usual care group. Patients (> 18 years old) with a neurological confirmed diagnosis of ischemic stroke who can be discharged home without follow-up treatment at an outpatient rehabilitation clinic will be included. In the intervention group, patients will receive a short, individualized, semi-structured consultation by specialized nurses in addition to usual care. This consultation includes 1) screening for cognitive and emotional problems, 2) screening for restrictions in participation, 3) promotion of self-management strategies and 4) a decision tool for referral to rehabilitation services. The intervention will be performed approximately 6 weeks after the stroke at the neurology outpatient clinics and will take approximately 60 min. The control group will receive care as usual. Both groups will be followed-up at 6 weeks, 3 months and 12 months after stroke. The primary outcome will be the level of participation measured with the Restriction subscale of the Utrecht Scale for Evaluation of Rehabilitation on the level of Participation (USER-Participation-R) at 12 months. A cost-effectiveness analysis and process evaluation will be performed alongside. DISCUSSION: This trial is the first to evaluate clinical effectiveness, cost-effectiveness and implementation of screening and patient-tailored care for cognitive and emotional problems compared to care as usual in patients discharged home after ischemic stroke. Potentially, this will improve the outcomes for patients with frequently occurring cognitive and emotional problems after stroke. TRIAL REGISTRATION: Netherlands Trial Register: NL7295 , registered 25 September 2018.


Subject(s)
Brain Ischemia , Ischemic Stroke , Stroke Rehabilitation , Stroke , Adolescent , Cognition , Cost-Benefit Analysis , Humans , Multicenter Studies as Topic , Netherlands , Patient Discharge , Quality of Life , Randomized Controlled Trials as Topic , Stroke/therapy
14.
Spinal Cord Ser Cases ; 6(1): 73, 2020 08 13.
Article in English | MEDLINE | ID: mdl-32792476

ABSTRACT

STUDY DESIGN: Review of the literature and semi-structured interviews. OBJECTIVE: To explore the possible use of topical analgesics for the treatment of neuropathic pain (NP) in spinal cord injury (SCI). SETTING: Institute for Neuropathic Pain, Soest, The Netherlands. METHODS: A review was performed of studies on topical analgesics for SCI-related NP published up to May 2019. In addition, eight persons with SCI-related NP who were treated with topical analgesics were interviewed in a semi-structured interview on their experience with topical analgesics. RESULTS: Seven studies (five case reports and two case series) were found that evaluated the use of topical analgesics for SCI-related NP. None of the studies used a control treatment. Topical analgesics included baclofen, ketamine, lidocaine, capsaicin, and isosorbide dinitrate. All studies reported a decrease in NP over time. Persons interviewed were 49-72 years of age and all but one had an incomplete SCI. They used topical agents containing phenytoin, amitriptyline, baclofen, ketamine or loperamide. All showed a decrease in pain of at least 3 points on the 11-point numeric rating scale during this treatment. DISCUSSION/CONCLUSIONS: Evidence on the use of topical analgesics in SCI is scarce. Case reports, case series and interviews suggest that the use of topical analgesics can be beneficial in treating SCI-related NP. Placebo-controlled studies are required to investigate the effect of topical analgesics on SCI-related NP.


Subject(s)
Analgesics/pharmacology , Chronic Pain/drug therapy , Neuralgia/drug therapy , Neuralgia/therapy , Spinal Cord Injuries/drug therapy , Humans , Spinal Cord Injuries/complications , Treatment Outcome
15.
J Psychosom Res ; 132: 109974, 2020 05.
Article in English | MEDLINE | ID: mdl-32155469

ABSTRACT

OBJECTIVE: To describe illness cognitions among patients with amyotrophic lateral sclerosis (ALS), to study cross-sectional associations between illness cognitions and health-related quality of life (HRQoL) and to study the predictive value of illness cognitions measured shortly after the diagnosis for HRQoL at follow-up. METHODS: Prospective longitudinal design. We administered Self-report questionnaires at study onset (n = 72) and follow-up (n = 48). Median follow-up period was 10.0 months. At baseline median ALS Functional Rating Scale-Revised was 43, median time since onset of symptoms was 13.6 months, 79% of patients presented with spinal onset. Illness cognitions Helplessness, Acceptance and Disease Benefits were measured with the Illness Cognitions Questionnaire (ICQ) and HRQoL with the ALS Assessment Questionnaire (ALSAQ-40). Correlational and regression analyses were used. RESULTS: Patients experienced more Helplessness at follow-up. We found no significant changes in Acceptance or Disease Benefits at follow-up. In cross-sectional analyses, Helplessness was independently related to worse HRQoL at baseline (ß = 0.44; p = .001) and Acceptance and Disease Benefits were independently related to worse HRQoL at follow-up (ß = -0.17, p = .045) and (ß = -0.186, p = .03 respectively). Longitudinal analyses showed that, adjusted for disease severity at baseline, Helplessness at baseline was a predictor of worse HRQoL at follow-up (ß = 0.43; p = .006). None of the illness cognitions were a significant predictor of HRQoL with adjustment for baseline HRQoL. CONCLUSION: Helplessness was independently associated with HRQoL in the cross-sectional and longitudinal analyses. These results can help us identify patients shortly after diagnosis who might benefit from psychological interventions.


Subject(s)
Amyotrophic Lateral Sclerosis/psychology , Cognition/physiology , Quality of Life/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Female , Humans , Longitudinal Studies , Male , Middle Aged , Prospective Studies , Young Adult
16.
Disabil Rehabil Assist Technol ; 15(6): 684-691, 2020 08.
Article in English | MEDLINE | ID: mdl-31012747

ABSTRACT

Purpose: The objective of this study was to develop a questionnaire to assess confidence in wheelchair mobility in Dutch youth (WheelCon-Mobility Dutch Youth).Methods: (1) A forward-backward translation process was used to translate the original WheelCon-M from English to Dutch. (2) Items related to wheelchair mobility in Dutch youth were selected and adapted based on focus groups with youth, parents and health care professionals to create the WheelCon-Mobility Dutch Youth. (3) The WheelCon-Mobility Dutch Youth and the Utrecht Pediatric Wheelchair Mobility Skills Test 2.0 (UP-WMST 2.0) were administered to 62 participants to evaluate internal consistency and construct validity.Results: Translation and cultural adaptation led to general adaptations in instructions, sentence structure and response scale. At the item level, 24 items were included with (n = 17) and without (n = 7) adaptation, 10 items were deleted and 7 new items were included. The WheelCon-Mobility Dutch Youth had an excellent Cronbach's alpha of 0.924 and a significant correlation (r = 0.44, p < .001) with the UP-WMST 2.0.Conclusions: This study resulted in the adaptation of the WheelCon-M into the WheelCon-Mobility for Dutch youth using a manual wheelchair. Our study suggests there is evidence supporting the internal consistency and construct validity of the WheelCon-Mobility Dutch Youth.Implications for RehabilitationThe WheelCon-Mobility Dutch Youth is a newly developed tool for assessing confidence in wheelchair mobility in Dutch youth using a manual wheelchair.It is important to assess performance and confidence in wheelchair mobility in paediatric rehabilitation.


Subject(s)
Cross-Cultural Comparison , Disabled Persons/rehabilitation , Self Concept , Translating , Wheelchairs , Adolescent , Child , Female , Humans , Male , Netherlands , Reproducibility of Results , Surveys and Questionnaires
17.
J Neurol ; 266(9): 2252-2257, 2019 Sep.
Article in English | MEDLINE | ID: mdl-31161387

ABSTRACT

BACKGROUND: Cerebral ischaemia is thought to be an important determinant of cognitive outcome after aneurysmal subarachnoid haemorrhage (aSAH), but the exact relationship is unclear. We studied the effect of ischaemic brain lesions during clinical course on cognitive outcome 2 months after aSAH. METHODS: We studied 74 consecutive patients admitted to the University Medical Center Utrecht who had MRI post-coiling (3-21 days post-aSAH) and neuropsychological examination at 2 months. An ischaemic lesion was defined as hyperintensity on T2-FLAIR and DWI images. We measured both cognitive complaints (subjective) and cognitive functioning (objective). The relationship between ischaemic brain lesions and cognitive outcome was analysed by logistic regression analyses. RESULTS: In 40 of 74 patients (54%), 152 ischaemic lesions were found. The median number of lesions per patient was 2 (1-37) and the median total lesion volume was 0.2 (0-17.4) mL. No difference was found between the group with and the group without ischaemic lesions with respect to the frequency of cognitive complaints. In the group with ischaemic lesions, significantly more patients (55%) showed poor cognitive functioning compared to the group without ischaemic lesions (26%) (OR 3.4, 95% CI 1.3-9.1). We found no relationship between the number and volume of the ischaemic lesions and cognitive functioning. CONCLUSIONS: Ischaemic brain lesions detected on MRI during clinical course after aSAH is a marker for poor cognitive functioning 2 months after aSAH, irrespective of the number or volume of the ischaemic lesions. Network or connectivity studies are needed to better understand the relationship between location of the ischaemic brain lesions and cognitive functioning.


Subject(s)
Brain Ischemia/diagnostic imaging , Brain/diagnostic imaging , Cognition Disorders/diagnostic imaging , Cognition , Subarachnoid Hemorrhage/diagnostic imaging , Aged , Brain/physiology , Brain Ischemia/complications , Brain Ischemia/psychology , Cognition/physiology , Cognition Disorders/etiology , Cognition Disorders/psychology , Female , Humans , Male , Middle Aged , Neuropsychological Tests , Prospective Studies , Subarachnoid Hemorrhage/complications , Subarachnoid Hemorrhage/psychology
18.
Neuropsychol Rehabil ; 29(7): 1042-1061, 2019 Aug.
Article in English | MEDLINE | ID: mdl-28720024

ABSTRACT

Post-stroke navigation complaints are frequent (about 30%) and intervention is possible, but there is no assessment instrument to identify patients with navigation complaints. We therefore studied the clinical validity of the Wayfinding Questionnaire (WQ) in a cross-sectional study with 158 chronic stroke patients and 131 healthy controls. Patients with low (more navigation complaints) versus normal WQ scores were compared for demographics, stroke characteristics, emotional and cognitive complaints, and health-related quality of life (HRQoL). Actual navigation performance of 78 patients was assessed in a virtual reality setting. Effect sizes (d) were calculated. WQ responses (22 items) of stroke patients were compared with those of controls (discriminant validity). Results showed that patients with a low WQ score (n = 49, 32%) were more often women (p = 0.013) and less educated (p = 0.004), reported more cognitive complaints (d = 0.69), more emotional problems (d = 0.38 and 0.52), and lower HRQoL (d = 0.40 and 0.45) and, last but not least, performed worse on the navigation ability tasks (d = 0.23-0.80). Patients scored lower than controls on 21/22 WQ items, predominantly with small to medium effect sizes (d = 0.20-0.51). We conclude that the WQ is valid as a measure of navigation complaints in stroke patients, and thus strongly advocate its use in stroke care.


Subject(s)
Perceptual Disorders/complications , Perceptual Disorders/diagnosis , Self Report , Spatial Navigation , Stroke/complications , Stroke/psychology , Surveys and Questionnaires , Adult , Aged , Aged, 80 and over , Case-Control Studies , Cognition , Cross-Sectional Studies , Emotions , Female , Humans , Male , Middle Aged , Perceptual Disorders/psychology , Quality of Life , Sex Factors , Stroke/diagnosis , Virtual Reality , Young Adult
19.
Eur J Neurol ; 25(12): 1486-1489, 2018 12.
Article in English | MEDLINE | ID: mdl-30048027

ABSTRACT

BACKGROUND AND PURPOSE: In randomized trials magnesium supplementation did not improve clinical outcome after aneurysmal subarachnoid haemorrhage (aSAH) on handicap scales. After aSAH, many patients have cognitive problems that may not translate into handicap. The effect of magnesium on cognitive outcome after aSAH was studied. METHODS: In total, 209 patients who had been included in the Magnesium for Aneurysmal Subarachnoid Haemorrhage (MASH-2) trial in the University Medical Centre of Utrecht were studied. Patients had been randomized to 64 mmol magnesium sulfate daily or placebo during hospitalization. Three months after aSAH patients underwent a neuropsychological examination (NPE) consisting of six neuropsychological tests or a brief cognitive assessment. Poisson and linear regression analyses were used to analyse the effect of magnesium on cognition. RESULTS: In the magnesium group 53 (49.5%) of the 107 patients and in the placebo group 51 (50.0%) of the 102 patients scored lower than the median cognitive score [relative risk 0.99, 95% confidence interval (CI) 0.76-1.30]. Linear regression analyses showed no significant relationship between intervention and cognition (B = 0.05, 95% CI -0.15 to 0.33). CONCLUSIONS: Treatment with magnesium has no effect on cognitive outcome after aSAH.


Subject(s)
Cognition Disorders/drug therapy , Cognition/drug effects , Magnesium/pharmacology , Subarachnoid Hemorrhage/drug therapy , Adult , Aged , Cognition Disorders/etiology , Cognition Disorders/psychology , Double-Blind Method , Female , Humans , Magnesium/therapeutic use , Male , Middle Aged , Neuropsychological Tests , Subarachnoid Hemorrhage/complications , Subarachnoid Hemorrhage/psychology , Treatment Outcome
20.
Neuropsychol Rehabil ; 27(4): 581-598, 2017 Jun.
Article in English | MEDLINE | ID: mdl-26609798

ABSTRACT

The aims of this longitudinal study were: (1) to assess associations between neuropsychological factors and health-related quality of life (HRQoL) and participation three months after discharge from inpatient acquired brain injury (ABI) rehabilitation; and (2) to determine the best neuropsychological predictor of HRQoL and participation after controlling for demographic and injury-related factors. Patients with ABI (n = 100) were assessed within approximately two weeks of enrolment in inpatient rehabilitation. Predictor variables included demographic and injury-related characteristics and the following neuropsychological factors: active and passive coping, attention, executive functioning, verbal memory, learning potential, depressive symptoms, motivation, extraversion, neuroticism and self-awareness. Bivariate analyses revealed that passive coping, executive functioning, depressive symptoms, extraversion, and neuroticism were significantly associated with HRQoL and/or participation. Neuropsychological factors significantly explained additional variance in HRQoL (18.1-21.6%) and participation (6.9-20.3%) after controlling for demographic and injury-related factors. However, a higher tendency towards passive coping was the only significant neuropsychological predictor (ß = -0.305 to -0.464) of lower HRQoL and participation. This study shows that neuropsychological functioning, and in particular passive coping, plays a role in predicting HRQoL and participation after inpatient ABI rehabilitation and emphasises the importance of addressing patients' coping styles in an early phase of ABI rehabilitation.


Subject(s)
Brain Injuries/psychology , Brain Injuries/rehabilitation , Quality of Life/psychology , Social Behavior , Adaptation, Psychological , Adult , Aged , Brain Injuries/diagnosis , Depression , Executive Function , Female , Follow-Up Studies , Humans , Longitudinal Studies , Male , Middle Aged , Netherlands , Neuropsychological Tests , Personality , Prognosis , Prospective Studies , Rehabilitation Centers , Treatment Outcome , Young Adult
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