Orphanet J Rare Dis
February 2024
Background: Fahr's disease and syndrome are rare disorders leading to calcification of the small arteries in the basal ganglia of the brain, resulting in a wide range of symptoms comprising cognitive decline, movement disorders and neuropsychiatric symptoms. No disease-modifying therapies are available. Studies have shown the potential of treatment of ectopic vascular calcifications with bisphosphonates.
View Article and Find Full Text PDFObjective: To determine differences in participation problems between diagnostic groups and to examine diagnosis as a determinant of participation with and without statistically accounting for confounders.
Design: Secondary analyses of data from 8 studies.
Setting: Community, the Netherlands.
Background: Although the use of patient-reported outcome measures to assess Health-Related Quality of Life (HRQoL) has been advocated, it is still open to debate which patient-reported outcome measure should be preferred to evaluate HRQoL after stroke.
Aim: To compare the measurement properties (including concurrent validity and discriminant ability) between the 5-dimensional 5-level EuroQol (EQ-5D-5L) and the Patient-Reported Outcomes Measurement Information System 10-Question Global Health Short Form (PROMIS-10) to evaluate HRQoL 3 months after stroke.
Design: Cross-sectional study.
Background: Support programs for partners of patients with acquired brain injury are necessary since these partners experience several unfavorable consequences of caregiving, such as a high burden, emotional distress, and poor quality of life. Evidence-based support strategies that can be included in these support programs are psychoeducation, skill building, problem solving, and improving feelings of mastery. A promising approach would seem to be to combine web-based support with face-to-face consultations, creating a blended care intervention.
View Article and Find Full Text PDFObjective: To validate the Caregiver Mastery Scale for partners of patients with acquired brain injury.
Design: The score distributions, internal consistency and convergent validity of the Caregiver Mastery Scale were determined.
Subjects: A total of 92 partners (53% male, age 62 years) of patients with acquired brain injury (91% stroke) discharged from inpatient rehabilitation (time since injury 32 months).
Background: Symptoms of anxiety and depression are present in almost half of the patients who survive an aneurysmal subarachnoid hemorrhage (aSAH), but the long-term course is unknown.
Aim: To study the longitudinal course and predictors of symptoms of anxiety and depression after aSAH.
Design: Prospective longitudinal study with test occasions at 3 months (baseline), 1 year (T2) and 2-5 years (T3) post-aSAH.
Objective: To investigate whether the self-management intervention was implemented as intended. Additionally, we studied involvement in and satisfaction with the intervention among patients, their partners and therapists.
Design: Mixed method, prospective study.
Objective: To investigate the effectiveness of a self-management intervention aimed at proactive coping for stroke patients and partners, compared with an education intervention.
Design: Multicentre randomized controlled trial.
Participants: The study included 113 stroke patients (mean age 57.
Objective: To describe the course of social support (everyday support, support in problem situations and esteem support) from initial inpatient rehabilitation until 3 years post-stroke and to examine the cross-sectional and longitudinal relationships of social support with depressive symptoms.
Design: Prospective cohort study.
Subjects: A total of 249 stroke patients.
Objective: To examine the associations of proactive coping and self-efficacy with psychosocial outcomes in individuals after stroke.
Design: Cross-sectional study. Regression analyses were performed.
Objectives: To determine long-term cognitive complaints and symptoms of depression or anxiety in patients following surgery for a cerebral meningioma, and to examine factors associated with these outcomes.
Design: Cross-sectional study.
Patients: Patients operated on for a cerebral meningioma in the University Medical Center Utrecht, The Netherlands, between 2007 and 2009.
Objective: To describe the rationale behind and description of a group-based self-management intervention developed for stroke patients and their partners.
Rationale: Based on the assumption that proactive coping strategies are beneficial for the re-uptake of daily life by stroke patients and partners, we developed a new stroke-specific, group-based self-management intervention based on proactive action planning. A first concept of the treatment protocol was developed based on the proactive coping theory, the Health Action Process Approach model, existing interventions and expert consultations.
Objective: To examine psychometric properties of the Utrecht Proactive Coping Competence scale (UPCC) and explore relations of proactive coping with health-related quality of life (HRQOL) and characteristics of patients with stroke.
Design: Cross-sectional study. Reliability and convergent validity, and associations with HRQOL and characteristics of patients with stroke were examined.
Rationale: Many stroke patients and their partners report long-term negative consequences of stroke on their health-related quality of life. Adequate self-management abilities may help manage the consequences of the stroke, but it is unknown what specific intervention might be effective to enhance self-management abilities of stroke patients and their partners.
Aim: The study aims to investigate the effectiveness of a 10-week group self-management intervention addressing proactive coping strategies compared with a group education intervention in stroke patients and their partners.
Background: Although poststroke depression has a significant impact on a patient's ability to recover after stroke, it is generally not recognized. Structured screening can help nurses identify symptoms of depression in stroke patients. In clinical practice, the utility of an instrument is as importantas its validity and reliability.
View Article and Find Full Text PDFObjective: To investigate satisfaction with respite care, the well-being of informal caregivers and patients with acquired brain injury (ABI) who receive respite care by day-care activity centers, and factors related to caregiver well-being.
Design: Cross-sectional cohort study.
Setting: Adult day-care activity centers.
Purpose: To compare the life satisfaction of stroke patients to that of their spouses, and to examine spouses' variables as determinants of the patients' life satisfaction.
Method: Patients with a first-ever stroke who were admitted to an inpatient rehabilitation centre and their spouses were included (n=78 couples). Measurements took place 3 years after the stroke.
Objective: To determine the long-term course of social activity after a stroke.
Design: Prospective cohort study.
Patients: Patients with a first-ever supratentorial stroke were selected in 4 Dutch rehabilitation centres.
Objective. To obtain a psychosocial profile of patients with poststroke fatigue (PSF), which could aid in optimizing treatment strategies. Methods.
View Article and Find Full Text PDFObjective: To assess the reproducibility of 3 participation measures.
Design: Repeated administration of a postal questionnaire with a 2-week interval.
Participants: Outpatients (n = 47) from 2 rehabilitation centres and a university hospital in The Netherlands.
The objective of this study was to investigate the value of screening for cognitive functions at the start of an inpatient rehabilitation programme to predict the health status 1 and 3 years poststroke. In this longitudinal cohort study of stroke patients in inpatient rehabilitation data of 134 participants were analysed. Cognitive and clinical data were collected after admission to inpatient rehabilitation treatment.
View Article and Find Full Text PDFObjective: To determine whether there is a difference between patients with a cerebral infarction and those with an intracerebral haemorrhage with respect to the development of independence in activities of daily living over the first year post-stroke.
Methods: Patients after first-ever stroke who were admitted to an inpatient rehabilitation programme were included. The study had a longitudinal design and measurements took place at admission, 8, 10, 12, 26 and 52 weeks post-stroke.
Several generic multidimensional health status questionnaires are available, but it is not clear whether or not these measures are interchangeable in terms of content. Consequently, we investigated the content validity of the Sickness Impact Profile 68 (SIP68), Medical Outcome Study Short Form 36 (SF-36), and the Darmouth COOP Functional Health Assessment Charts/World Organization of National Colleges, Academies and Academic Associations of General Practitioners/Family Physicians (COOP/WONCA) charts. A total of 198 stroke patients referred to inpatient rehabilitation were interviewed 1 year poststroke.
View Article and Find Full Text PDFObjective: The aim of this study was to investigate unidimensionality and differential item functioning of the SF-36 physical functioning scale (PF10) in patients with various neurological disorders.
Patients: PATIENTS post-stroke (n = 198), with multiple sclerosis (n = 151) and amyotrophic lateral sclerosis (n = 193) participated.
Methods: Unidimensionality of the PF10 within the patient groups was investigated by performing a separate Rasch analysis for each group.
Objective: To develop a prognostic model to predict mobility outcome one year post-stroke.
Design: Prospective cohort study in patients with a first-ever stroke admitted for inpatient rehabilitation.
Patients: A total of 217 patients with stroke (mean age 58 years) following inpatient rehabilitation in 4 rehabilitation centres across the Netherlands.