BackgroundThe uptake of eRehabilitation programs in stroke care is insufficient, despite the growing availability. The aim of this study was to explore which factors influence the uptake of eRehabilitation in stroke rehabilitation, among stroke patients, informal caregivers, and healthcare professionals.MethodsA qualitative focus group study with eight focus groups (6–8 participants per group) was conducted: six with stroke patients/informal caregivers and two with healthcare professionals involved in stroke rehabilitation (rehabilitation physicians, physical therapists, occupational therapists, psychologists, managers). Focus group interviews were audiotaped, transcribed in full, and analyzed by direct content analysis using the implementation model of Grol.ResultsThirty-two patients, 15 informal caregivers, and 13 healthcare professionals were included. A total of 14 influencing factors were found, grouped to 5 of the 6 levels of the implementation model of Grol (Innovation, Organizational context, Individual patient, Individual professional, and Economic and political context). Most quotes of patients, informal caregivers, and healthcare professionals were classified to factors at the level of the Innovation (e.g., content, attractiveness, and feasibility of eRehabilitation programs). In addition, for patients, relatively many quotes were classified to factors at the level of the individual patient (e.g., patients characteristics as fatigue and the inability to understand ICT-devices), and for healthcare professionals at the level of the organizational context (e.g., having sufficient time and the fit with existing processes of care).ConclusionAlthough there was a considerable overlap in reported factors between patients/informal caregivers and healthcare professionals when it concerns eRehabilitation as innovation, its seems that patients/informal caregivers give more emphasis to factors related to the individual patient, whereas healthcare professionals emphasize the importance of factors related to the organizational context. This difference should be considered when developing an implementation strategy for patients and healthcare professionals separately.
IntroductionDepression is frequent in ankylosing spondylitis (AS) patients. However, epidemiological data about the potential increase in risk are lacking. This study compares the rate of doctor-diagnosed depression in a well defined cohort of AS patients to the general population seeking care.MethodsThe Skåne Healthcare Register comprises healthcare data of each resident in Region Skåne, Sweden (population 1.2 million), including ICD-10 diagnoses. Using physician coded consultation data from years 1999 to 2011, we calculated depression consultation rates for all AS patients. We obtained standardized depression-rate ratios by dividing the observed depression rate in AS patients by the expected rate based on the corresponding age- and sex-specific rates of depression in the general population seeking care. A ratio >1 equals a higher rate of depression among AS patients.ResultsThe AS cohort consisted of 1738 subjects (65% men) with a mean age of 54 years. The reference population consisted of 967,012 subjects. During the 13-year observation period 10% (n = 172) of the AS cohort had a doctor-diagnosed depression compared to 6% (n = 105) to be expected. The standardized estimate of depression-rate ratio was 1.81 (95% confidence interval 1.44 to 2.24) in women men and 1.49 (1.20 to 1.89) in men.ConclusionsThe rate of doctor-diagnosed depression is increased about 80% in female and 50% in male AS patients. Future challenges are to timely identify and treat the AS patients who suffer from depression.
The Educational Needs Assessment Tool (ENAT) was developed in the United Kingdom (UK) to systematically assess the educational needs of patients with arthritis. The aim of the present study was to describe the educational needs of Dutch patients with rheumatoid arthritis (RA) by using the Dutch version of the ENAT (DENAT). The original UK version of the ENAT, comprising 39 items grouped into seven domains, was translated into Dutch according to international guidelines for cross-cultural translation and adaptation. The DENAT was then sent to a random sample of 319 RA patients registered at the outpatient clinic of a university hospital. For each domain (score range 1-5, equalling low-high educational needs), a median score with the inter-quartile range was computed. The Kruskal-Wallis test was used to determine possible associations between educational needs and age, disease duration, gender and educational background. The response rate was 165 out of 319 (52%). The median educational needs scores were 2.5 for "managing pain", 3.0 for "movement", 2.0 for "feelings", 4.0 for "arthritis process", 4.0 for "treatments from health professionals", 3.5 for "self-help measures" and 2.5 for "support systems". Lower age and shorter disease duration were associated with more educational needs in the domain "support systems". In addition, younger patients had more educational needs regarding managing pain and feelings than older patients. There were no associations between gender or educational background and educational needs. The DENAT has demonstrated its ability to identify individual educational needs of Dutch patients with RA. The lower age and shorter disease duration were associated with more educational needs. The practical applicability of the DENAT needs further research.
Methods A convenience sample of patients from seven European countries was included, comprising the following diagnostic groups: ankylosing spondylitis (AS), psoriatic arthritis (PsA), systemic sclerosis (SSc), systemic lupus erythematosus (SLE), osteoarthritis (OA) and fibromyalgia syndrome (FMS). Translated versions of the ENAT were completed through surveys in each country. Rasch analysis was used to assess the construct validity of the adapted ENATs including differential item functioning by culture (cross-cultural DIF). Initially, the data from each country and diagnostic group were fitted to the Rasch model separately, and then the pooled data from each diagnostic group. ResultsThe sample comprised 3015 patients, the majority, 1996 (66.2%) were women. Patient characteristics (stratified by diagnostic group) were comparable across countries except the educational background, which was variable. In most occasions, the 39-item ENAT deviated significantly from the Rasch model expectations (item-trait interaction 2 p<0.05). After correction for local dependency (grouping the items into seven domains and analysing them as "testlets"), fit to the model was satisfied (item-trait interaction 2 p>0.18) in all pooled disease group datasets except OA ( 2 =99.91; p=0.002). The internal consistency in each group was high (Person Separation Index above 0.90). There was no significant DIF by person characteristics. Cross-cultural DIF was found in some items, which required adjustments. Subsequently, interval-level scales were calibrated, to enable transformation of ENAT scores when required. ConclusionsThe adapted ENAT is a valid tool with high internal consistency, providing accurate estimation of the educational needs of people with rheumatic diseases. Cross-cultural comparison of educational needs is now possible.. 3
Background A user-centered design approach for eHealth interventions improves their effectiveness in stroke rehabilitation. Nevertheless, insight into requirements of end-users (patients/informal caregivers and/or health professionals) for eRehabilitation is lacking. The aim of this study was to identify end-user requirements for a comprehensive eHealth program in stroke rehabilitation. Methods Eight focus groups were conducted to identify user requirements; six with patients/informal caregivers and two with health professionals involved in stroke rehabilitation (rehabilitation physicians, physiotherapists, occupational therapists, psychologists, team coordinators, speech therapist). The focus groups were audiotaped and transcribed in full. Direct content analysis was used to identify the end-user requirements for stroke eHealth interventions concerning three categories: accessibility, usability and content. Results In total, 45 requirements for the accessibility, usability and content of a stroke eRehabilitation program emerged from the focus groups. Most requirements concerned content (27 requirements), followed by usability (12 requirements) and accessibility (6 requirements). Patients/informal caregivers and health professionals each identified 37 requirements, respectively, with 29 of them overlapping. Conclusions Requirements between stroke patients/informal caregivers and health professionals differed on several aspects. Therefore, involving the perspectives of all end users in the design process of stroke eRehabilitation programs is needed to achieve a user-centered design. Trial registration The study was approved by the Medical Ethical Review Board of the Leiden University Medical Center [P15.281].
Purpose To describe factors associated with RTW in patients 2-5 years after stroke. Methods Cross sectional study, including patients 2-5 years after hospitalization for a first-ever stroke, who were <65 years and had been gainfully employed before stroke. Patients completed a set of questionnaires on working status and educational level, physical functioning (Frenchay Activities Index, FAI), mental functioning (Hospital Anxiety and Depression Scale, HADS), Coping Orientations to Problems Experienced, (COPE easy) and quality of life (Short-Form(SF)-36 and EQ(Euroqol)-5D). Caregivers completed the Caregiver Strain Index (CSI). Baseline stroke characteristics were gathered retrospectively. Baseline characteristics and current health status were compared between patients who did and did not RTW by means of logistic regression analysis with odds ratios (OR) and 95 % confidence intervals (CI), adjusted for age and gender. Results Forty-six patients were included, mean age of 47.7 years (SD 9.7), mean time since stroke of 36 months (SD 11.4); 18 (39 %) had RTW. After adjusting for age and gender a shorter length of hospitalization was associated with RTW (OR 0.87; CI 0.77-0.99). Of the current health status, a lower HADS depression score (0.76; 0.63-0.92), a less avoidant coping style (1.99; 0.80-5.00), better scores on the FAI (1.13; 1.03-1.25), the mental component summary score of the SF36 (1.07; 1.01-1.13), the EQ5D (349; 3.33-36687) and the CSI (0.68; 0.50-0.92) were associated with the chance of RTW. Conclusions A minority of working patients RTW after stroke; a shorter duration of the initial hospitalization was associated with a favorable work outcome. The significant association between work status and activities, mental aspects and quality of life underlines the need to develop effective interventions supporting RTW.
Cognitive impairment after stroke has a direct impact on daily functioning and quality of life (QoL) of patients and is associated with higher mortality and healthcare costs. The aim of this study was to determine the effect of a computer-based brain training programme on cognitive functioning, QoL and self-efficacy compared to a control condition in stroke patients. Stroke patients with self-perceived cognitive impairment were randomly allocated to the intervention or control group. The intervention consisted of an 8-week brain training programme (Lumosity Inc.®). The control group received general information about the brain weekly. Assessments consisted of a set of neuropsychological tests and questionnaires. In addition, adherence with trained computer tasks was recorded. No effect of the training was found on cognitive functioning, QoL or self-efficacy when compared to the control condition, except for very limited effects on working memory and speed. This study found very limited effects on neuropsychological tests that were closely related to trained computer tasks, but no transfers to other tests or self-perceived cognitive failures, QoL or self-efficacy. These findings warrant the need for further research into the value of computer-based brain training to improve cognitive functioning in the chronic phase after stroke.
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