Dataset Information

Perspectives From Persons With Multiple Sclerosis for a Comprehensive Real-World Change Therapy for Mobility.

ABSTRACT:

Objective

To assess the personal perspectives of persons with multiple sclerosis (MS) on the acceptability of a novel physical therapy program that is designed to transfer gains from the clinic to their real-world lower extremity (LE) use, termed LE constraint-induced therapy (CIT). The program includes several behavior change techniques (prescribed home exercises, daily structured therapist interviews and problem solving for LE activities, keeping an activity diary) and a concentrated physical treatment schedule.

Design

Anonymous internet survey.

Setting

Participants accessed the survey from computers in the community.

Participants

Five hundred adults (N=500) were recruited from an MS support organization's registry for having indicated from mild to total limb spasticity because they were anticipated to have markedly impaired LE use in the community.

Interventions

Not applicable.

Main outcome measures

Participants were offered the options on a nonnumerical Likert scale of "Very likely," "Likely," "Neutral," "Unlikely," or "Very unlikely" to indicate their personal acceptability for each of 5 different key treatment procedures after these were explained. Totals for each option within each key procedure were analyzed for their acceptability.

Results

Of the 281 persons who responded, 90% expressed interest in participating in LE CIT. A large majority of persons who completed the survey selected either "Very likely" or "Likely" for each key procedure (median=88%, range=65%-90%, P<.01). This indicated strong acceptance for the procedures of LE CIT. In addition, more respondents who already had had previous physical therapy accepted LE CIT than did respondents who had not had physical therapy (P<.01).

Conclusions

The results suggest there is strong acceptance of CIT for mobility with preliminary evidence of benefiting community LE use for persons with MS. The results support further clinical trials of LE CIT for persons with MS.

SUBMITTER: Mark VW

PROVIDER: S-EPMC8904863 | biostudies-literature | 2022 Mar

REPOSITORIES: biostudies-literature

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Publications

Perspectives From Persons With Multiple Sclerosis for a Comprehensive Real-World Change Therapy for Mobility.

Mark Victor W VW Lee Ritalinda D'Andrea RD Taub Edward E Uswatte Gitendra G

Archives of rehabilitation research and clinical translation 20211112 1

<h4>Objective</h4>To assess the personal perspectives of persons with multiple sclerosis (MS) on the acceptability of a novel physical therapy program that is designed to transfer gains from the clinic to their real-world lower extremity (LE) use, termed LE constraint-induced therapy (CIT). The program includes several behavior change techniques (prescribed home exercises, daily structured therapist interviews and problem solving for LE activities, keeping an activity diary) and a concentrated p ...[more]

PMID: 35282147

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Project description:BackgroundThe increasing availability of "real-world" data in the form of written text holds promise for deepening our understanding of societal and health-related challenges. Textual data constitute a rich source of information, allowing the capture of lived experiences through a broad range of different sources of information (eg, content and emotional tone). Interviews are the "gold standard" for gaining qualitative insights into individual experiences and perspectives. However, conducting interviews on a large scale is not always feasible, and standardized quantitative assessment suitable for large-scale application may miss important information. Surveys that include open-text assessments can combine the advantages of both methods and are well suited for the application of natural language processing (NLP) methods. While innovations in NLP have made large-scale text analysis more accessible, the analysis of real-world textual data is still complex and requires several consecutive steps.ObjectiveWe developed and subsequently examined the utility and scientific value of an NLP pipeline for extracting real-world experiences from textual data to provide guidance for applied researchers.MethodsWe applied the NLP pipeline to large-scale textual data collected by the Swiss Multiple Sclerosis (MS) registry. Such textual data constitute an ideal use case for the study of real-world text data. Specifically, we examined 639 text reports on the experienced impact of the first COVID-19 lockdown from the perspectives of persons with MS. The pipeline has been implemented in Python and complemented by analyses of the "Linguistic Inquiry and Word Count" software. It consists of the following 5 interconnected analysis steps: (1) text preprocessing; (2) sentiment analysis; (3) descriptive text analysis; (4) unsupervised learning-topic modeling; and (5) results interpretation and validation.ResultsA topic modeling analysis identified the following 4 distinct groups based on the topics participants were mainly concerned with: "contacts/communication;" "social environment;" "work;" and "errands/daily routines." Notably, the sentiment analysis revealed that the "contacts/communication" group was characterized by a pronounced negative emotional tone underlying the text reports. This observed heterogeneity in emotional tonality underlying the reported experiences of the first COVID-19-related lockdown is likely to reflect differences in emotional burden, individual circumstances, and ways of coping with the pandemic, which is in line with previous research on this matter.ConclusionsThis study illustrates the timely and efficient applicability of an NLP pipeline and thereby serves as a precedent for applied researchers. Our study thereby contributes to both the dissemination of NLP techniques in applied health sciences and the identification of previously unknown experiences and burdens of persons with MS during the pandemic, which may be relevant for future treatment.

Project description:IntroductionPrior research has demonstrated that early treatment with high-efficacy disease-modifying therapies (DMTs), including ocrelizumab (OCR), can reduce relapses and delay disease progression among persons with multiple sclerosis (pwMS) compared with escalation from low-/moderate-efficacy DMTs. However, there is a lack of research examining the impact of early use of OCR on real-world clinical and economic outcomes. This study aimed to evaluate differences in events often associated with a relapse (EOAR) as well as non-DMT healthcare resource use (HCRU) and costs among pwMS who received OCR as a first-line treatment compared with later-line treatment after diagnosis.MethodsNewly diagnosed adult pwMS were selected from deidentified Optum Market Clarity claims data (study period: January 1, 2015-June 30, 2021). All pwMS were required to have initiated OCR after diagnosis and have 12 months of continuous eligibility prior to diagnosis. The index date was the date of initiation of the first-line DMT after diagnosis. pwMS who initiated OCR as first-line (1L OCR cohort) or a second- or later-line treatment (2L + OCR cohort) were matched 1:1 based on length of continuous eligibility after the first-line DMT and weighted using stabilized inverse probability of treatment. In the follow-up period, differences in outcomes, including annualized EOAR, non-DMT HCRU and costs, were evaluated for pwMS in the 1L vs. 2L + OCR cohorts.ResultsThe sample included 748 pwMS. During the follow-up period, pwMS in the 1L OCR cohort had a significantly lower annual rate of EOAR compared with pwMS in the 2L + OCR cohort (0.37 vs. 0.56; difference: 0.20 [95% CI 0.08, 0.32]). pwMS in the 1L OCR cohort had a significantly lower probability of any hospitalization within 1 year, fewer non-DMT outpatient visits and lower all-cause and MS-related, non-DMT costs compared with pwMS in the 2L + OCR cohort.ConclusionsFirst-line initiation OCR was associated with improvements in clinical and non-DMT economic outcomes compared with later-line initiation of OCR, suggesting that early initiation may benefit both patients and the healthcare system.

Dataset Information

Perspectives From Persons With Multiple Sclerosis for a Comprehensive Real-World Change Therapy for Mobility.

Objective

Design

Setting

Participants

Interventions

Main outcome measures

Results

Conclusions

Publications

Perspectives From Persons With Multiple Sclerosis for a Comprehensive Real-World Change Therapy for Mobility.

Similar Datasets

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