Is mHealth a Useful Tool for Self-Assessment and Rehabilitation of People with Multiple Sclerosis? A Systematic Review.
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ABSTRACT:
SUBMITTER: Bonnechere B
PROVIDER: S-EPMC8466296 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundMultiple sclerosis (MS) is a chronic, neurodegenerative disease that causes a range of motor, sensory, and cognitive symptoms. Due to these symptoms, people with MS are at a high risk for falls, fall-related injuries, and reductions in quality of life. There is no cure for MS, and managing symptoms and disease progression is important to maintain a high quality of life. Mobile health (mHealth) apps are commonly used by people with MS to help manage their health. However, there are limited health apps for people with MS designed to evaluate fall risk. A fall risk app can increase access to fall risk assessments and improve self-management. When designing mHealth apps, a user-centered approach is critical for improving use and adoption.ObjectiveThe purpose of this study is to undergo a user-centered approach to test and refine the usability of the app through an iterative design process.MethodsThe fall risk app Steady-MS is an extension of Steady, a fall risk app for older adults. Steady-MS consists of 2 components: a 25-item questionnaire about demographics and MS symptoms and 5 standing balance tasks. Data from the questionnaire and balance tasks were inputted into an algorithm to compute a fall risk score. Two iterations of semistructured interviews (n=5 participants per iteration) were performed to evaluate usability. People with MS used Steady-MS on a smartphone, thinking out loud. Interviews were recorded, transcribed, and developed into codes and themes. People with MS also completed the System Usability Scale.ResultsA total of 3 themes were identified: intuitive navigation, efficiency of use, and perceived value. Overall, the participants found Steady-MS efficient to use and useful to learn their fall risk score. There were challenges related to cognitive overload during the balance tasks. Modifications were made, and after the second iteration, people with MS reported that the app was intuitive and efficient. Average System Usability Scale scores were 95.5 in both iterations, representing excellent usability.ConclusionsSteady-MS is the first mHealth app for people with MS to assess their overall risk of falling and is usable by a subset of people with MS. People with MS found Steady-MS to be usable and useful for understanding their risk of falling. When developing future mHealth apps for people with MS, it is important to prevent cognitive overload through simple and clear instructions and present scores that are understood and interpreted correctly through visuals and text. These findings underscore the importance of user-centered design and provide a foundation for the future development of tools to assess and prevent scalable falls for people with MS. Future steps include understanding the validity of the fall risk algorithm and evaluating the clinical utility of the app.
| S-EPMC8080269 | biostudies-literature
Project description:BackgroundWalking capacity tests are commonly used to evaluate interventions aiming at reducing walking impairment in people with multiple sclerosis (pwMS). However, their ecological validity has recently been questioned. The aim of the present study was to investigate the ecological validity of the 2- and 6-minutes walking tests (2MWT and 6MWT) and the timed 25-foot walk (T25FW) after 28 days of multidisciplinary inpatient rehabilitation (MIR) in pwMS using accelerometry.MethodsPwMS wore an accelerometer on 7 consecutive days within a 14-day period prior to MIR, performed 2/6MWT and T25FW at the beginning and at the end of MIR, followed by another 7 consecutive days of accelerometry.ResultsSignificant improvements in 2/6MWT and T25FW after MIR in a cohort of 76 pwMS (mean age = 47.9, SD 8.3 years) were overall correlated to a significant gain in everyday life mobility (total steps/day). However, the correlation was strongly dependent on pre-existing walking disability defined by EDSS and only pwMS with "mild" walking impairment (EDSS 2-3.5) were able to transfer benefits measurable by walking capacity tests into improved everyday life mobility, while pwMS with "moderate to severe" walking disability (EDSS 4-6.5) were not.ConclusionEcological validity of changes in walking capacity tests following MIR is strongly dependent on pre-existing walking impairment.
| S-EPMC6675072 | biostudies-literature
Project description:Cognitive impairment is increasingly recognized as an important clinical issue in pediatric multiple sclerosis (MS). However, variations regarding its assessment and remediation are noted in clinical arena. This scoping review aims to collate available evidence concerning cognitive assessment tool and cognitive rehabilitation for pediatric MS. We performed a systematic search of electronic databases (MEDLINE, PubMed, CINAHL Plus, and Web of Science) from inception to February 2020. Reference lists of included articles and trial registers were also searched. We included original studies published in English that addressed cognitive assessment tools or cognitive rehabilitation for pediatric-onset MS. Fourteen studies fulfilled our inclusion criteria. Among them, 11 studies evaluated the psychometric aspects of various cognitive assessment tools in the context of pediatric MS, and different neuro-cognitive domains were emphasized across studies. There were only three pilot studies reporting cognitive rehabilitation for pediatric-onset MS, all of which used home-based computerized programs targeting working memory and attention, respectively. Overall, more systematic research on cognitive assessment tools and rehabilitation for pediatric MS is needed to inform evidence-based practice. Computer-assisted cognitive assessment and rehabilitation appear feasible and deserve further studies.
| S-EPMC7602453 | biostudies-literature
Project description:AbstractBackground:We developed a preference assessment tool to help assess patient goals, values, and preferences for multiple sclerosis (MS) management. All preference items in the tool were generated by people with MS. The aim of this study was to evaluate this tool in a national sample of people with MS.Methods:English-speaking patients with MS aged 21 to 75 years with access to the internet were recruited. Participants completed the preference tool online, which included separate modules assessing three core preference areas: treatment goals, preferences for attributes of disease-modifying therapies, and factors influencing a change in treatment. The tool generated a summary of participants' treatment goals and preferences. Immediately after viewing the summary, participants were asked to evaluate the tool. Rankings of preference domains were compared with rankings obtained in another study.Results:In 135 people with MS who completed the tool and evaluation, the highest ranked goal was brain health (memory, thinking, brain), followed by disability concerns (walking, strength, vision). Rankings were highly similar to those in the referent study. Nearly all participants reported that the tool helped them understand their goals and priorities regarding MS and that the summary appropriately reflected what is important to them. Most participants (87%) wanted to discuss their treatment goals and priorities with their clinician.Conclusions:This preference assessment tool successfully captured patients' goals, values, and preferences for MS treatment and could potentially be used to help patients communicate their preferences to their clinician.
| S-EPMC6295881 | biostudies-other
Project description: Not available
| S-EPMC11257893 | biostudies-literature
Project description:Strength training in people with multiple sclerosis (MS) is an important component of rehabilitation, but it can be challenging for clinicians to quantify strength accurately and reliably. This study investigated the psychometric properties of a clinical strength assessment protocol using handheld dynamometry and other objective, quantifiable tests for the lower extremities and trunk in people with MS.This study determined discriminant validity between 25 participants with MS and 25 controls and between participants with MS who had higher versus lower disability; test-retest reliability across 7 to 10 days; and response stability. The protocol included handheld dynamometry measurements of ankle dorsiflexion, knee flexion and extension; hip flexion, extension, abduction, and adduction; and trunk lateral flexion. Muscular endurance tests were used to measure trunk extension, trunk flexion, and ankle plantarflexion.The protocol discriminated between participants with MS and controls for all muscles tested (P < .001-.003). The protocol also discriminated between low- and moderate-disability groups (P = .001-.046) for 80% of the muscles tested. Test-retest reliability intraclass correlation coefficients were high (0.81-0.97). Minimal detectable change as a percentage of the mean was 13% to 36% for 85% of muscles tested.This study provides evidence for the discriminant validity, test-retest reliability, and response stability of a strength assessment protocol in people with MS. This protocol may be useful for tracking outcomes in people with MS for clinical investigations and practice.
| S-EPMC5649349 | biostudies-other
Project description:BackgroundThe proliferation of computerized neuropsychological assessment devices (CNADs) for screening and monitoring cognitive impairment is increasing exponentially. Previous reviews of computerized tests for multiple sclerosis (MS) were primarily qualitative and did not rigorously compare CNADs on psychometric properties.ObjectiveWe aimed to systematically review the literature on the use of CNADs in MS and identify test batteries and single tests with good evidence for reliability and validity.MethodA search of four major online databases was conducted for publications related to computerized testing and MS. Test-retest reliability and validity coefficients and effect sizes were recorded for each CNAD test, along with administration characteristics.ResultsWe identified 11 batteries and 33 individual tests from 120 peer-reviewed articles meeting the inclusion criteria. CNADs with the strongest psychometric support include the CogState Brief Battery, Cognitive Drug Research Battery, NeuroTrax, CNS-Vital Signs, and computer-based administrations of the Symbol Digit Modalities Test.ConclusionWe identified several CNADs that are valid to screen for MS-related cognitive impairment, or to supplement full, conventional neuropsychological assessment. The necessity of testing with a technician, and in a controlled clinic/laboratory environment, remains uncertain.
| S-EPMC6875828 | biostudies-literature
Project description:Background: Anxiety is prevalent in people with multiple sclerosis (MS). Screening measures are used to identify symptoms of anxiety, but the optimal measure to screen for anxiety disorders in MS has not been established. Methods: We searched the MEDLINE, Embase, PsycINFO, PsycARTICLES Full Text, Cumulative Index to Nursing and Allied Health Literature, Web of Science, and Scopus databases from database inception until August 7, 2015. Two independent reviewers screened abstracts and full-text reports for study inclusion, extracted data, and assessed risk of bias. We included studies that evaluated the criterion validity of anxiety screening tools when measuring anxiety in individuals with well-documented MS, as measured by sensitivity, specificity, and positive and negative predictive values. Results: Of the 3181 abstracts screened, 18 articles were reviewed in full text, of which 4 met the inclusion criteria. The criterion validity of three screening tools was assessed: the Hospital Anxiety and Depression Scale-Anxiety (HADS-A), Beck Anxiety Inventory (BAI), and 7-item Generalized Anxiety Disorder Scale (GAD-7). The HADS-A was validated against the Structured Clinical Interview for DSM-IV, the Schedules for Clinical Assessment in Neuropsychiatry (SCAN) interview, and the BAI. The BAI was validated against the SCAN, and the GAD-7 was validated against the HADS-A. The HADS-A had higher measures of sensitivity and specificity than did the BAI and the GAD-7. Conclusions: Based on this small sample, the HADS-A shows promise as an applicable measure for people with MS. Screening scales used to identify anxiety in MS must be validated against appropriate reference standards.
| S-EPMC5166593 | biostudies-literature
Project description:BackgroundMultiple Sclerosis (MS) is an inflammatory and neurodegenerative disease often causing decreased quality of life, social withdrawal and unemployment. Studies examining the effect of pharmacological interventions demonstrated only minor effects, whereas non-pharmacological interventions as e.g. patient education programs have shown promising results.ObjectiveWe aim to systematically review the literature to determine the effect of patient education programs on fatigue in MS.MethodsWe conducted a comprehensive search in PubMed for randomized controlled trials (RCTs) that evaluated patient education programs for MS-related fatigue. Interventions evaluating physical exercise and/or pharmacological treatments were not included. Meta-analyses were performed using the generic inverse variance method.ResultsThe search identified 856 citations. After full-text screening we identified ten trials that met the inclusion criteria. Data of 1021 participants were analyzed. Meta-analyses showed significant positive effects on fatigue severity (weighted mean difference -0.43; 95% CI -0.74 to -0.11) and fatigue impact (-0.48; -0.82 to -0.15), but not for depression (-0.35 (95% CI -0.75 to 0.05; p = 0.08). Essentially, we categorized patient education programs into two types: firstly, interventions with a focus on cognitive-behavioral therapy (CBT) and secondly, interventions that teach patients ways of managing daily fatigue. CBT-based approaches seem to generate better results in reducing patient-reported fatigue severity. Analysing CBT studies only, the pooled weighted mean difference for fatigue severity was -0.60 (95% CI; -1.08 to -0.11) compared to non-CBT approaches (-0.20; 95% CI; -0.60 to -0.19). Furthermore, interventions employing an individual approach seem to reduce fatigue more effectively than group-based approaches (pooled weighted mean difference for fatigue severity in face-to-face studies was -0.80 (95% CI; -1.13 to -0.47) compared to group-based studies with -0,17 (95% CI; -0,39 to 0,05). Longest follow-up data were available for 12 months post-intervention.ConclusionOverall, included studies demonstrated that educational programs and especially CBT-based approaches have a positive effect on reducing fatigue. Since fatigue is thought to be a multidimensional symptom, it should be treated with a multidimensional approach targeting patients' behavior as well as their emotional and mental attitude towards fatigue. However, the clinical relevance of the treatment effects i.e. the relevance for patients' daily functioning remains unclear and long-term effects, i.e. sustainability of effects beyond 6 months, warrants further work. This review has been registered in the PROSPERO international prospective register of systematic reviews data base (Registration number: CRD42014014224).
| S-EPMC5340368 | biostudies-literature
Project description:Shame and embarrassment related to Parkinson's disease (PD) are rarely addressed in clinical practice nor studied in neuroscience research, partly because no specific tool exists to detect them in PD. Objective: To develop a self-applied assessment tool of shame and embarrassment specifically related to PD or its treatment, to promptly identify the presence and severity of these two emotions in PD. Methods: Identification and selection of relevant items were obtained from the collection of PD patients' opinions during support groups and interviews. Several further items were added following a literature review. Subsequently, a two-phase pilot study was performed for identification of ambiguous items and omissions, and to obtain preliminary data on acceptability, reliability, validity and relevance of the new scale (SPARK). Results: A total of 105 PD patients were enrolled in the study. Embarrassment was reported in 85% of patients, while shame was present in 26%. Fifteen percent of patients did not describe any shame or embarrassment. On average, the intensity of these two emotions was low with a marked floor effect in SPARK items and subscales. However, SPARK total score inter-individual variability was important (range 1-84 out of 99). Acceptability and quality of data were satisfactory with no floor or ceiling effects (2.9% each) or missing data. Internal consistency (Cronbach's alpha) was 0.94 for total score and 0.73-0.87 for subscales. The scale correlated ?0.60 with instruments measuring related constructs. Content validity was satisfactory. SPARK total score strongly correlated with impaired health-related quality of life (rS = 0.81), the propensity to feel embarrassed or ashamed (rS = 0.68 and 0.66, respectively), and anxiety (rS = 0.72) and depression (rS = 0.63) levels. Moderate to high correlations were observed between SPARK total score and apathy (rS = 0.46) and a more pronounced personality trait directed toward harm avoidance (rS = 0.46). No significant differences in SPARK scores were found by sex, education level, PD duration, Hoehn and Yahr stages or PD phenotype. Conclusion: Preliminary analysis of psychometric properties suggests that SPARK could be an acceptable and reliable instrument for assessing shame and embarrassment in PD. SPARK could help healthcare professionals to identify and characterize PD-induced shame and embarrassment.
| S-EPMC7411180 | biostudies-literature