scholarly journals Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers

2021 ◽  
Vol 11 (8) ◽  
pp. 1087 ◽  
Author(s):  
Rocco Haase ◽  
Isabel Voigt ◽  
Maria Scholz ◽  
Hannes Schlieter ◽  
Martin Benedict ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Linear Models ◽  
Informal Caregivers ◽  
Patient Portal ◽  
Medication Information ◽  
Ehealth Services ◽  
Areas Of Interest ◽  
Healthcare Trends ◽  
Digital Healthcare ◽  
Ehealth Service

(1) Background: Persons with multiple sclerosis (pwMS) are often characterized as ideal adopters of new digital healthcare trends, but it is worth thinking about whether and which pwMS will be targeted and served by a particular eHealth service like a patient portal. With our study, we wanted to explore needs and barriers for subgroups of pwMS and their caregivers when interacting with eHealth services in care and daily living. (2) Methods: This study comprises results from two surveys: one collecting data from pwMS and their relatives (as informal caregivers) and another one providing information on the opinions and attitudes of healthcare professionals (HCPs). Data were analyzed descriptively and via generalized linear models. (3) Results: 185 pwMS, 25 informal caregivers, and 24 HCPs in the field of MS participated. Nine out of ten pwMS used information technology on a daily base. Individual impairments like in vision and cognition resulted in individual needs like the desire to actively monitor their disease course or communicate with their physician in person. HCPs reported that a complete medication overview, additional medication information, overview of future visits and a reminder of medication intake would be very helpful eHealth features for pwMS, while they themselves preferred features organizing and enriching future visits. (4) Conclusions: A closer look at the various profiles of eHealth adoption in pwMS and their caregivers indicated that there is a broad and robust enthusiasm across several subgroups that does not exclude anyone in general, but constitutes specific areas of interest. For pwMS, the focus was on eHealth services that connect previously collected information and make them easily accessible and understandable.

scholarly journals The formation of patient trust and its transference to online health services: the case of a Dutch online patient portal for rehabilitation care

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Lex van Velsen ◽  
Ina Flierman ◽  
Monique Tabak
Keyword(s):  
Health Services ◽  
Structural Equation ◽  
Assessment Tool ◽  
Measurement Model ◽  
Care Team ◽  
Care Organization ◽  
Patient Portal ◽  
Patient Trust ◽  
Related Factors ◽  
Ehealth Service

Abstract Background Trust is widely recognized as a crucial factor in successful physician–patient communication and patient engagement in treatment. However, with the rise of eHealth technologies, such as online patient portals, the role of trust and the factors that influence it need to be reconsidered. In this study, we aim to identify the factors that contribute to trust in an eHealth service and we aim to identify the consequences of trust in an eHealth service in terms of use. Methods The Patient Trust Assessment Tool was provided to new outpatients of a rehabilitation center in the Netherlands, that were expected to use the center’s online patient portal. Via this tool, we assessed five trust-related factors. This data was supplemented by questions about demographics (age, gender, rehabilitation treatment) and data about use (number of sessions, total time spent in sessions), derived from data logs. Data was analyzed via Partial Least Squares Structural Equation Modelling. Results In total, 93 patients participated in the study. Out of these participants, 61 used the portal at least once. The measurement model was considered good. Trust in the organization was found to affect trust in the care team (β = .63), trust in the care team affected trust in the treatment (β = .60). Both, trust in the care team and trust in the treatment influenced trust in the technology (β = .42 and .30, respectively). Trust in the technology affected the holistic concept trust in the service (β = .78). This holistic trust in the service finally, did not affect use. Conclusions This study shows that the formation of this trust is not unidimensional, but consists of different, separate factors (trust in the care organization, trust in the care team and trust in the treatment). Trust transfer does take place from offline to online health services. However, trust in the service does not directly affect the use of the eHealth technology.

Association of Age at Onset With Gray Matter Volume and White Matter Microstructural Abnormalities in People With Multiple Sclerosis

Neurology ◽  
2021 ◽  
pp. 10.1212/WNL.0000000000012869
Author(s):  
Raffaello Bonacchi ◽  
Alessandro Meani ◽  
Elisabetta Pagani ◽  
Olga Marchesi ◽  
Andrea Falini ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
White Matter ◽  
Gray Matter ◽  
Linear Models ◽  
Gray Matter Volume ◽  
Age At Onset ◽  
Healthy Controls ◽  
Compensatory Mechanisms ◽  
Cross Sectional ◽  
Matter Volume

Objective:To investigate whether age at onset influences brain gray matter volume (GMV) and white matter (WM) microstructural abnormalities in adult multiple sclerosis (MS) patients, given its influence on clinical phenotype and disease course.Method:In this hypothesis-driven cross-sectional study, we enrolled 67 pediatric-onset MS (POMS) patients and 143 sex- and disease duration (DD)-matched randomly-selected adult-onset MS (AOMS) patients, together with 208 healthy controls. All subjects underwent neurological evaluation and 3T MRI acquisition. MRI variables were standardized based on healthy controls, to remove effects of age and sex. Associations with DD in POMS and AOMS patients were studied with linear models. Time to reach clinical and MRI milestones was assessed with product-limit approach.Results:At DD=1 year, GMV and WM fractional anisotropy (FA) were abnormal in AOMS but not in POMS patients. Significant interaction of age at onset (POMS vs AOMS) into the association with DD was found for GMV and WM FA. The crossing point of regression lines in POMS and AOMS patients was at 20 years of DD for GMV and 14 for WM FA. For POMS and AOMS patients, median DD was 29 and 19 years to reach Expanded Disability Status Scale=3 (p<0.001), 31 and 26 years to reach abnormal Paced Auditory Serial Addition Task-3 (p=0.01), 24 and 18 years to reach abnormal GMV (p=0.04), and 19 and 17 years to reach abnormal WM FA (p=0.36).Conclusions:Younger patients are initially resilient to MS-related damage. Then, compensatory mechanisms start failing with loss of WM integrity, followed by GM atrophy and finally disability.

Patient Accessible EHR is Controversial

2017 ◽  
Vol 6 (1) ◽  
pp. 29-45 ◽  
Author(s):  
Isabella Scandurra ◽  
Anette Jansson ◽  
Marie-Louise Forsberg-Fransson ◽  
Ture Ålander
Keyword(s):  
Electronic Health Records ◽  
Specific Training ◽  
Work Processes ◽  
Staff Perceptions ◽  
Communication Tools ◽  
Health Records ◽  
Record Keeping ◽  
Information And Communication ◽  
Ehealth Services ◽  
Ehealth Service

In Sweden, a national eHealth service providing Patient Accessible Electronic Health Records is now being widely deployed, with 400 000 users in January 2016. Although the Patient Data Act states that patients have a right to take part of their health records, the introduction has been controversial. Results from a pre-deployment questionnaire to record-keeping care professions in a healthcare region indicate that perceptions and knowledge differ not only between the professions but, more importantly, that knowledge about current eHealth development and action plans needs to increase as implementation will affect their work processes. Staff perceptions and knowledge are considered being some of the most important issues to handle during the implementation of eHealth services aiming to provide healthcare information and communication tools for patients and relatives. To cover the gaps, specific training is needed, and all record-keeping professionals need to be more involved in the implementation of such eHealth services.

scholarly journals The Multiple Sclerosis Severity Score: fluctuations and prognostic ability in a longitudinal cohort of patients with MS

2019 ◽  
Vol 5 (1) ◽  
pp. 205521731983725 ◽  
Author(s):  
RH Gross ◽  
SH Sillau ◽  
AE Miller ◽  
C Farrell ◽  
SC Krieger
Keyword(s):  
Multiple Sclerosis ◽  
Severity Score ◽  
Mixed Model ◽  
Linear Models ◽  
Longitudinal Cohort ◽  
Kaplan Meier ◽  
The Individual ◽  
Survival Plot ◽  
The Impact ◽  
Over Time

Background The Multiple Sclerosis Severity Score (MSSS), combining the Expanded Disability Status Scale (EDSS) and disease duration, attempts to stratify multiple sclerosis (MS) patients based on their rate of progression. Its prognostic ability in the individual patient remains unproven. Objectives To assess the stability of MSSS within individual persons with MS in a longitudinal cohort, to evaluate whether certain factors influence MSSS variability, and to explore the ability of MSSS to predict future ambulatory function. Methods A single-center retrospective review was performed of patients following a single provider for at least 8 years. Mixed model regression modeled MSSS over time. A Kaplan–Meier survival plot was fitted, using change of baseline MSSS by at least one decile as the event. Cox modeling assessed the influence of baseline clinical and demographic factors on the hazard of changing MSSS by at least one decile. Linear models evaluated the impact of baseline EDSS, baseline MSSS, and other factors on the Timed 25-Foot Walk (T25FW). Results Out of 122 patients, 68 (55.7%) deviated from baseline MSSS by at least one decile. Final T25FW had slightly weaker correlation to baseline MSSS than to baseline EDSS, which was moderately strongly correlated with future log T25FW. Conclusion Individual MSSS scores often vary over time. Clinicians should exercise caution when using MSSS to prognosticate.

Occurrence and microstructural features of slowly expanding lesions on fingolimod or natalizumab treatment in multiple sclerosis

2020 ◽  
pp. 135245852096910
Author(s):  
Paolo Preziosa ◽  
Elisabetta Pagani ◽  
Lucia Moiola ◽  
Mariaemma Rodegher ◽  
Massimo Filippi ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Signal Intensity ◽  
Linear Models ◽  
Magnetization Transfer ◽  
Brain Magnetic Resonance Imaging ◽  
White Matter Lesions ◽  
Magnetization Transfer Ratio ◽  
Treatment Groups ◽  
Natalizumab Treatment ◽  
Magnetic Resonance Imaging Mri

Background: In multiple sclerosis (MS), up to 57% of white matter lesions are chronically active. These slowly expanding lesions (SELs) contribute to disability progression. Objective: The aim of this study is to compare fingolimod and natalizumab effects on progressive linearly enlarging lesions (i.e. SELs), a putative biomarker of smouldering inflammation. Methods: Relapsing-remitting MS patients starting fingolimod ( n = 24) or natalizumab ( n = 28) underwent 3T brain magnetic resonance imaging (MRI) at baseline, months 6, 12 and 24. SELs were identified among baseline-visible lesions showing ⩾ 12.5% of annual increase, calculated by linearly fitting the Jacobian of the nonlinear deformation field between timepoints obtained combining T1- and T2-weighted scans. SEL burden, magnetization transfer ratio (MTR) and T1 signal intensity were compared using linear models. Results: The prevalences of fingolimod (75%) and natalizumab patients (46%) with ⩾ 1 SEL were not significantly different (adjusted- p = 0.08). Fingolimod group had higher SEL number and volume (adjusted- p ⩽ 0.047, not false discovery rate (FDR) survived). In both groups, SELs versus non-SELs showed lower MTR and T1 signal intensity (adjusted- p ⩽ 0.01, FDR-survived). Longitudinally, non-SEL MTR increased in both treatment groups (adjusted- p ⩽ 0.005, FDR-survived). T1 signal intensity decreased in SELs with both treatments (adjusted- p ⩽ 0.049, FDR-survived in fingolimod group) and increased in natalizumab non-SELs (adjusted- p = 0.03, FDR-survived). Conclusion: The effects of natalizumab and fingolimod on SEL occurrence seem modest, with natalizumab being slightly more effective. Both treatments may promote reparative mechanisms in stable or chronic inactive lesions.

scholarly journals A Digital Patient Portal for Patients With Multiple Sclerosis

2020 ◽  
Vol 11 ◽  
Author(s):  
Isabel Voigt ◽  
Martin Benedict ◽  
Marcel Susky ◽  
Tim Scheplitz ◽  
Sophie Frankowitz ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Portal

Diffusion tensor magnetic resonance imaging in very early onset pediatric multiple sclerosis

2015 ◽  
Vol 22 (5) ◽  
pp. 620-627 ◽  
Author(s):  
MA Rocca ◽  
M Sonkin ◽  
M Copetti ◽  
E Pagani ◽  
DL Arnold ◽  
...  
Keyword(s):  
Magnetic Resonance Imaging ◽  
Multiple Sclerosis ◽  
Magnetic Resonance ◽  
Structural Integrity ◽  
Linear Models ◽  
Diffusion Tensor ◽  
Mean Diffusivity ◽  
Lesion Volume ◽  
Resonance Imaging ◽  
The Impact

Objectives: Active myelination during childhood may influence the impact of multiple sclerosis (MS) on brain structural integrity. We studied normal-appearing white matter (NAWM) in children with MS onset before age 12 years using diffusion tensor (DT) magnetic resonance imaging (MRI). Methods: DT MRI scans were obtained from 22 MS children with their first attack before age 12 years, and 31 healthy controls from two referral centers. Using probabilistic tractography, brain tissue integrity within interhemispheric, intrahemispheric, and projection tracts was compared between patients and site-matched controls. The impact of disease and age at MRI on tract NAWM fractional anisotropy (FA) and mean diffusivity (MD) values was evaluated using linear models. Results: Compared to controls, pediatric MS patients had reduced FA and increased MD of the bilateral superior longitudinal fasciculus and corpus callosum (CC), without center-by-group interaction. CC NAWM average FA was correlated with brain T2 lesion volume. In controls, the majority of the tracts analyzed showed a significant increase of FA and decrease of MD with age. Such a linear correlation was lost in patients. Conclusions: In very young pediatric MS patients, DT MRI abnormalities affect brain WM tracts differentially, and are only partially correlated with focal WM lesions. Impaired maturation of WM tracts with age may be an additional factor contributing to these findings.

scholarly journals Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis

2015 ◽  
Vol 2015 ◽  
pp. 1-10 ◽  
Author(s):  
E. Bayen ◽  
C. Papeix ◽  
P. Pradat-Diehl ◽  
C. Lubetzki ◽  
M. E. Joël
Keyword(s):  
Multiple Sclerosis ◽  
Informal Caregivers ◽  
Executive Dysfunction ◽  
Female Gender ◽  
Poor Mental Health ◽  
Subjective Burden ◽  
Disability Status ◽  
Poor Mental Health Status ◽  
Objective Burden ◽  
Zarit Burden Inventory

Background. Home care for patients with Multiple Sclerosis (MS) relies largely on informal caregivers (ICs).Methods. We assessed ICs objective burden (Resource Utilization in Dementia measuring informal care time (ICT)) and ICs subjective burden (Zarit Burden Inventory (ZBI)).Results. ICs (N=99) were spouses (70%), mean age 52 years, assisting disabled patients with a mean EDSS (Expanded Disability Status Scale) of 5.5, with executive dysfunction (mean DEX (Dysexecutive questionnaire) of 25) and a duration of MS ranging from 1 to 44 years. Objective burden was high (mean ICT = 6.5 hours/day), mostly consisting of supervision time. Subjective burden was moderate (mean ZBI = 27.3). Multivariate analyses showed that both burdens were positively correlated with higher levels of EDSS and DEX, whereas coresidency and IC’s female gender correlated with objective burden only and IC’s poor mental health status with subjective burden only. When considering MS aggressiveness, it appeared that both burdens were not correlated with a higher duration of MS but rather increased for patients with severe and early dysexecutive function and for patients classified as fast progressors according to the Multiple Sclerosis Severity Score.Conclusion. Evaluation of MS disability course and IC’s personal situation is crucial to understand the burden process and to implement adequate interventions in MS.

scholarly journals Multiple Sclerosis and MyChart Messaging: A Retrospective Review Evaluating Its Use

2021 ◽  
Vol preprint (2021) ◽  
pp. 0000-0000
Author(s):  
Nadia Khalil ◽  
Angela Aungst ◽  
Lise Casady ◽  
Kevin Allison ◽  
Ryann Fiascki ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Portal ◽  
Cross Sectional ◽  
Quality Improvement Research ◽  
Time Investment ◽  
Risk Patients ◽  
Utilization Patterns ◽  
Hand Disability ◽  
Sectional Analysis ◽  
Disease Specific

Abstract Background: Understanding patterns of MyChart (Epic Systems Corp) messaging has the potential to alter clinical practice. However, because most research evaluating its use has been conducted in limited contexts, utilization patterns in patients with multiple sclerosis (MS) remain unclear. We characterized factors associated with high rates of MyChart messaging in patients with MS. Methods: We performed a retrospective cross-sectional analysis of adult patients in an academic outpatient clinic’s database (N = 439). Inclusion criteria were one or more clinic visits and MS diagnosis. We extracted demographic and disease-specific characteristics and MyChart messaging information. Results: MyChart users in the database totaled 74% (n = 324). MyChart users were more often younger, had shorter duration since diagnosis, had lower Patient-Determined Disease Steps scores, and were more likely to be using high-efficacy disease-modifying therapies than nonusers. Messaging rates were positively correlated with total number of unique medications (R = 0.17, P = .003) and negatively correlated with age (R = –0.11, P = .018). Conclusions: Although research has implicated arm-hand disability and impaired vision as barriers to patient portal use, these findings suggest the relationship between MS-specific disease burden and MyChart utilization is also a function of underlying medical complexity in capacities beyond physical disability. These data may serve as groundwork for investigation into other disease-specific settings and for quality improvement research to mitigate these high rates in at-risk patients, optimizing provider time investment, clinic productivity, and patient safety and preventing health care provider burnout.

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