Approximately 40-70% of people with Parkinson's disease (PD) fall each year, causing decreased activity levels and quality of life. Current fall-prevention strategies include the use of ...pharmacological and non-pharmacological therapies. To increase the accessibility of this vulnerable population, we developed a multidisciplinary telemedicine program using an Information and Communication Technology (ICT) platform. We hypothesized that the risk for falling in PD would decrease among participants receiving a multidisciplinary telemedicine intervention program added to standard office-based neurological care.
To determine the feasibility and cost-effectiveness of a multidisciplinary telemedicine intervention to decrease the incidence of falls in patients with PD.
Ongoing, longitudinal, randomized, single-blinded, case-control, clinical trial. We will include 76 non-demented patients with idiopathic PD with a high risk of falling and limited access to multidisciplinary care. The intervention group (n = 38) will receive multidisciplinary remote care in addition to standard medical care, and the control group (n = 38) standard medical care only. Nutrition, sarcopenia and frailty status, motor, non-motor symptoms, health-related quality of life, caregiver burden, falls, balance and gait disturbances, direct and non-medical costs will be assessed using validated rating scales.
This study will provide a cost-effectiveness assessment of multidisciplinary telemedicine intervention for fall reduction in PD, in addition to standard neurological medical care.
In this challenging initiative, we will determine whether a multidisciplinary telemedicine intervention program can reduce falls, as an alternative intervention option for PD patients with restricted access to multidisciplinary care.
ClinicalTrials.gov Identifier: NCT04694443.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Telemedicine for Hyperkinetic Movement Disorders Srinivasan, Ragini; Ben-Pazi, Hilla; Dekker, Marieke ...
Tremor and other hyperkinetic movements (New York, N.Y.),
02/2020, Letnik:
10
Journal Article
Recenzirano
Odprti dostop
Telemedicine is the use of electronic communication technology to facilitate healthcare between distant providers and patients. In addition to synchronous video conferencing, asynchronous video ...transfer has been used to support care for neurology patients.
There is a growing literature on using telemedicine in movement disorders, with the most common focus on Parkinson’s disease. There is accumulating evidence for videoconferencing to diagnose and treat patients with hyperkinetic movement disorders and to support providers in remote underserviced areas. Cognitive testing has been shown to be feasible remotely. Genetic counseling and other counseling-based therapeutic interventions have also successfully performed in hyperkinetic movement disorders.
We use a problem-based approach to review the current evidence for the use of telemedicine in various hyperkinetic movement disorders. This Viewpoint attempts to identify possible telemedicine solutions as well as discussing unmet needs and future directions.
To estimate the magnitude in which Parkinson's disease (PD) symptoms and health- related quality of life (HRQoL) determined PD costs over a 4-year period.
Data collected during 3-month, each year, ...for 4 years, from the ELEP study, included sociodemographic, clinical and use of resources information. Costs were calculated yearly, as mean 3-month costs/patient and updated to Spanish €, 2012. Mixed linear models were performed to analyze total, direct and indirect costs based on symptoms and HRQoL.
One-hundred and seventy four patients were included. Mean (SD) age: 63 (11) years, mean (SD) disease duration: 8 (6) years. Ninety-three percent were HY I, II or III (mild or moderate disease). Forty-nine percent remained in the same stage during the study period. Clinical evaluation and HRQoL scales showed relatively slight changes over time, demonstrating a stable group overall. Mean (SD) PD total costs augmented 92.5%, from € 2,082.17 (€ 2,889.86) in year 1 to € 4,008.6 (€ 7,757.35) in year 4. Total, direct and indirect cost incremented 45.96%, 35.63%, and 69.69% for mild disease, respectively, whereas increased 166.52% for total, 55.68% for direct and 347.85% for indirect cost in patients with moderate PD. For severe patients, cost remained almost the same throughout the study. For each additional point in the SCOPA-Motor scale total costs increased € 75.72 (p = 0.0174); for each additional point on SCOPA-Motor and the SCOPA-COG, direct costs incremented € 49.21 (p = 0.0094) and € 44.81 (p = 0.0404), respectively; and for each extra point on the pain scale, indirect costs increased € 16.31 (p = 0.0228).
PD is an expensive disease in Spain. Disease progression and severity as well as motor and cognitive dysfunctions are major drivers of costs increments. Therapeutic measures aimed at controlling progression and symptoms could help contain disease expenses.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background:
The use of telemedicine has increased to address the ongoing healthcare needs of patients with movement disorders.
Objective:
We aimed to describe the technical and basic security ...features of the most popular telemedicine videoconferencing software.
Methods:
We conducted a systematic review of articles/websites about “Telemedicine,” “Cybersecurity,” and “Videoconferencing software.” Technical capabilities and basic security features were determined for each videoconferencing software.
Results:
Twenty-six videoconferencing software programs were reviewed, 13 (50.0%) were specifically designed for general healthcare, and 6/26 (23.0%) were compliant with European and US regulations. Overall technical and security information were found in 5/26 software (19.2%), including Microsoft Teams, Google Hangout, Coviu, Doxy.me, and Thera platforms.
Conclusions:
Detailed information about technical capabilities and data security of videoconferencing tools is not easily and openly retrievable. Our data serves as a guide for practitioners seeking to understand what features should be examined when choosing software and what options are available.
Levodopa-carbidopa intestinal gel (LCIG) has shown to be efficacious in motor and non-motor symptoms (NMS). Nevertheless, studies with patient Quality of Life (QoL) as a primary endpoint are scarce. ...To assess the effect of LCIG on Advanced Parkinson's Disease (APD) patients QoL. Secondarily, the impact on motor symptoms and NMS, emotional well-being, treatment satisfaction, and caregiver QoL, stress, disease burden, anxiety, depression, and work impairment were also investigated. In this prospective, 6-month multicenter postmarketing observational study, LCIG was administered to 59 patients with APD. Endpoints were assessed using validated scales and questionnaires. LCIG significantly improved patient QoL (PDQ-39 mean change ± standard deviation from baseline, -12.8 ± 14.6; P < 0.0001), motor symptoms (UPDRS-III in "On," -6.5 ± 11.8; P = 0.0002), NMS (NMSS, -35.7 ± 31.1; P < 0.0001), mood (Norris/Bond-Lader VAS, -6.6 ± 21.1; P = 0.0297), fatigue (PFS-16, -0.6 ± 1.0; P = 0.0003), depression (BDI-II, -5.1 ± 9.4; P = 0.0002), anxiety (BAI, -6.2 ± 9.6; P < 0.0001), and patient treatment satisfaction (SATMED-Q, 16.1 ± 16.8; P < 0.0001). There were significant correlations between the change from baseline to 6 months between PDQ-39 and UPDRS-IV, NMSS, BAI, BDI-II, AS, and PFS-16 scores, and Norris/Bond-Lader alertness/sedation factor. Caregiver anxiety also improved (Goldberg anxiety scale, -1.1 ± 1.0; P = 0.0234), but the clinical relevance of this finding is questionable. The serious adverse events reported were similar to those previously described for LCIG. In patients with APD, LCIG improves QoL, motor symptoms and NMS, emotional well-being, and satisfaction with the treatment. Improvement in patient QoL is associated with improvements in motor complications, NMS, anxiety, depression, apathy and fatigue. Improvements in patients' QoL does not correspond with improvements in caregivers' QoL or burden.
Introduction:
Huntington’s disease (HD) is an autosomal dominant neurodegenerative disorder characterized by motor dysfunction, cognitive impairment, and psychiatric disorders. These symptoms cause ...functional limitations in occupational performance. This study aimed to describe the difficulties in self-care, productivity, and leisure activities and to analyze the patients’ own perception and satisfaction and the association with sex, age, disability, HD severity, and quality of life.
Method:
We conducted an observational, retrospective study in 38 patients with HD without cognitive impairment at the Burgos University Hospital. We assessed occupational performance, quality of life, and HD severity with the Canadian Occupational Performance Measure, Short-Form Health Survey 12, Unified Huntington’s Disease Rating Scale, Total Functional Capacity, and the Problems Behavior Assessment.
Results:
One hundred sixty-five occupations (median 4, range 2–7) were categorized as self-care (50.90%), leisure (30.30%), and productivity (18.79%). Patients reported a higher degree of satisfaction with the activities prioritized than with the degree of performance. Elderly HD patients reported more satisfaction in leisure and women in self-care. Self-ratings of satisfaction in productivity were associated with higher levels of mental wellbeing.
Conclusions:
HD patients have problems with their daily life occupations, particularly with self-care. This underlines the need for assessment tools that capture the complexity of occupations.
Huntington's disease (HD) is an autosomal dominant progressive brain disorder, caused by a pathological expansion of a CAG repeat that encodes the huntingtin gene. This genetic neurodegenerative rare ...disease is characterized by cognitive, motor, and neuropsychiatric manifestations. The aim of the treatment is symptomatic and addresses the hyperkinetic disorders (chorea, dystonia, myoclonus, tics, etc.) and the behavioural and cognitive disturbances (depression, anxiety, psychosis, etc.) associated with the disease. HD is still a complex condition in need of innovative and efficient treatment. The long-term goal of pharmacogenetic studies is to use genotype data to predict the effective treatment response to a specific drug and, in turn, prevent potential undesirable effects of its administration. Chorea, depression, and psychotic symptoms have a substantial impact on HD patients' quality of life and could be better controlled with the help of pharmacogenetic knowledge. We aimed to carry out a review of the available publications and evidence related to the pharmacogenetics of HD, with the objective of compiling all information that may be useful in optimizing drug administration. The impact of pharmacogenetic information on the response to antidepressants and antipsychotics is well documented in psychiatric patients, but this approach has not been investigated in HD patients. Future research should address several issues to ensure that pharmacogenetic clinical use is appropriately supported, feasible, and applicable.
Background: Despite recent advances in acute stroke care, only 1–8% of patients can receive reperfusion therapies, mainly because of prehospital delay (PHD). Objective: This study aimed to identify ...factors associated with PHD from the onset of acute stroke symptoms until arrival at the hospital. Methods: A cross-sectional study was conducted including all patients consecutively admitted with stroke symptoms to Burgos University Hospital (Burgos, Spain). Socio-demographic, clinical, behavioral, cognitive, and contextualized characteristics were recorded, and their possible associations with PHD were studied using univariate and multivariable regression analyses. Results: The median PHD of 322 patients was 138.50 min. The following factors decreased the PHD and time until reperfusion treatment where applicable: asking for help immediately after the onset of symptoms (OR 10.36; 95% confidence interval (CI) 4.47–23.99), onset of stroke during the daytime (OR 7.73; 95% CI 3.09–19.34) and the weekend (OR 2.64; 95% CI 1.19–5.85), occurrence of stroke outside the home (OR 7.09; 95% CI 1.97–25.55), using a prenotification system (OR 6.46; 95% CI 1.71–8.39), patient’s perception of being unable to control symptoms without assistance (OR 5.14; 95% CI 2.60–10.16), previous knowledge of stroke as a medical emergency (OR 3.20; 95% CI 1.38–7.40), call to emergency medical services as the first medical contact (OR 2.77; 95% CI 1.32–5.88), speech/language difficulties experienced by the patient (OR 2.21; 95% CI 1.16–4.36), and the identification of stroke symptoms by the patient (OR 1.98; 95% CI 1.03–3.82). Conclusions: The interval between the onset of symptoms and arrival at the hospital depends on certain contextual, cognitive, and behavioral factors, all of which should be considered when planning future public awareness campaigns.
Revisar la mejor evidencia científica disponible sobre el uso de las nuevas tecnologías para evaluar actividad física y su relación con la salud.
Revisión sistemática de 39 artículos.
Artículos ...publicados en PubMed, Web of Science, Medline y Science Direct, durante los últimos 10 años.
Se seleccionaron artículos relacionados con ensayos clínicos publicados en inglés/español en base a los siguientes términos: «aging», «physical activity assessment», «wearable technology», «telemedicine», «new technologies» y «disease».
Mediante método PRISMA.
La actividad física (AF) diurna y nocturna se registra con dispositivos electrónicos inteligentes (DEI). Estos acoplan sensores de movimiento que permiten una monitorización activa y pasiva. Este sistema de registro está dentro del grupo de biomarcadores digitales. La gran ventaja que proporcionan los DEI es la posibilidad de estudiar evaluación remota y longitudinalmente la AF. Pero existen importantes limitaciones también, como son la falta de patrones de AF establecidos como gold standard, que caractericen a la población con base en los grupos de edad, sexo y enfermedad de base.
El uso de los DEI representa un nuevo sistema de monitorización de AF, dentro del grupo de biomarcadores digitales. No obstante, faltan estudios que permitan establecer su asociación con el estado de salud dentro de los diferentes grupos de población.
Review the best scientific evidence available on the use of new technologies to assess physical activity and its relationship with health.
Systematic review of 39 articles.
Articles published in PubMed, Web of Science, Medline and Science Direct, during the last 10 years.
Articles related to clinical trials published in English/Spanish were selected based on the following terms: «aging», «physical activity assessment», «wearable technology», «telemedicine», «new technologies» y «disease».
Using the PRISMA method.
Day and night physical activity (PA) is recorded with intelligent electronic devices (DEI). These couple motion sensors that allow active and passive monitoring. This registration system is within the group of digital biomarkers. The great advantege provided by intelligent electronic devices is the possibility of stuyding reomte and longitudinal evaluation of PA. But there are important limitations as well, such as the lack of established PA standards such as gold-standard, that characterize the population based on age groups, sex and underlying disease.
The use of DEI represents a new AF monitoring system, within the group of digital biomarkers. However, studies are lacking to establish its association with the health status within the different population groups.
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