67 research outputs found

    Evaluation of an Online Platform for Multiple Sclerosis Research: Patient Description, Validation of Severity Scale, and Exploration of BMI Effects on Disease Course

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    Objectives: To assess the potential of an online platform, PatientsLikeMe.com (PLM), for research in multiple sclerosis (MS). An investigation of the role of body mass index (BMI) on MS disease course was conducted to illustrate the utility of the platform. Methods: First, we compared the demographic characteristics of subjects from PLM and from a regional MS center. Second, we validated PLM’s patient-reported outcome measure (MS Rating Scale, MSRS) against standard physician-rated tools. Finally, we analyzed the relation of BMI to the MSRS measure. Results: Compared with 4,039 MS Center patients, the 10,255 PLM members were younger, more educated, and less often male and white. Disease course was more often relapsing remitting, with younger symptom onset and shorter disease duration. Differences were significant because of large sample sizes but small in absolute terms. MSRS scores for 121 MS Center patients revealed acceptable agreement between patient-derived and physician-derived composite scores (weighted kappa = 0.46). The Walking domain showed the highest weighted kappa (0.73) and correlation (rs = 0.86) between patient and physician scores. Additionally, there were good correlations between the patient-reported MSRS composite and walking scores and physician-derived measures: Expanded Disability Status Scale (composite rs = 0.61, walking rs = 0.74), Timed 25 Foot Walk (composite rs = 0.70, walking rs = 0.69), and Ambulation Index (composite rs = 0.81, walking rs = 0.84). Finally, using PLM data, we found a modest correlation between BMI and cross-sectional MSRS (rho = 0.17) and no association between BMI and disease course. Conclusions: The PLM population is comparable to a clinic population, and its patient-reported MSRS is correlated with existing clinical instruments. Thus, this online platform may provide a venue for MS investigations with unique strengths (frequent data collection, large sample sizes). To illustrate its applicability, we assessed the role of BMI in MS disease course but did not find a clinically meaningful role for BMI in this setting

    Perspectives on Linkage Involving Indigenous data

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    Topic: Perspectives on Linkage Involving Indigenous data Indigenous populations across the globe are reaffirming their sovereignty rights in the collection and use of Indigenous data. The Indigenous data sovereignty movement has been widely influential and can be unsettling for those who routinely use population-level linked data that include Indigenous identifiers. Ethical policies that stipulate community engagement for access, interpretation and dissemination of Indigenous data create an enabling environment through the critical process of negotiating and navigating data access in partnership with communities. This session will be designed to create space for leading Indigenous voices to set the tone for the discussion around Indigenous population data linkage. Objectives: • To provide participants with an opportunity to build on the themes of Indigenous Data Sovereignty presented in the keynote session as they apply to diverse Indigenous populations. • To explore approaches to the linkage of Indigenous-identified population data across four countries, including First Nations in three Canadian regions. • To share practical applications of Indigenous data sovereignty on data linkage and analysis and discussion. • To center Indigenous-driven data linkage and research. Facilitator: Jennifer Walker. Canada Research Chair in Indigenous Health, Laurentian University and Indigenous Lead, Institute for Clinical Evaluative Sciences. Collaborators: • Alberta: Bonnie Healy, Tina Apsassin, Chyloe Healy and William Wadsworth (Alberta First Nations Information Governance Centre) • Ontario: Carmen R. Jones (Chiefs of Ontario) and Jennifer Walker (Institute for Clinical Evaluative Sciences) • British Columbia: Jeff Reading (Providence Health Centre) and Laurel Lemchuk-Favel (First Nations Health Authority) • Australia: Raymond Lovett (Australian National University) • Aotearoa / New Zealand: Donna Cormack (University of Otago) • United States: Stephanie Rainie and Desi Rodriguez-Lonebear (University of Arizona) Session format: 90 minutes Collaborators will participate in a round-table introduction to the work they are doing. Collaborators will discuss the principles underlying their approaches to Indigenous data linkage as well as practical and concrete solutions to challenges. Questions to guide the discussion will be pre-determined by consensus among the collaborators and the themes will include: data governance, community engagement, Indigenous-led linkage and analysis of data, and decision-making regarding access to linked data. Other participants attending the session will be encouraged to listen and will have an opportunity to engage in the discussion and ask questions. Intended output or outcome: The key outcome of the session will be twofold. First, those actively working with Indigenous linked data will have an opportunity for an in-depth and meaningful dialogue about their work, which will promote international collaboration and sharing of ideas. Second, those with less experience and knowledge of the principles of Indigenous data sovereignty and their practical application will have an opportunity to listen to Indigenous people who are advancing the integration of Indigenous ways of knowing into data linkage and analysis. The output of the session will be a summary paper highlighting both the diversity and commonalities of approaches to Indigenous data linkage internationally. Areas where consensus exists, opportunities for collaboration, and challenges will be highlighted

    The Contribution of Cortical Lesions to a Composite MRI Scale of Disease Severity in Multiple Sclerosis

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    Objective: To test a new version of the Magnetic Resonance Disease Severity Scale (v.3 = MRDSS3) for multiple sclerosis (MS), incorporating cortical gray matter lesions (CLs) from 3T magnetic resonance imaging (MRI). Background: MRDSS1 was a cerebral MRI-defined composite scale of MS disease severity combining T2 lesion volume (T2LV), the ratio of T1 to T2LV (T1/T2), and whole brain atrophy [brain parenchymal fraction (BPF)]. MRDSS2 expanded the scale to include cerebral gray matter fraction (GMF) and upper cervical spinal cord area (UCCA). We tested the contribution of CLs to the scale (MRDSS3) in modeling the MRI relationship to clinical status. Methods: We studied 51 patients [3 clinically isolated syndrome, 43 relapsing-remitting, 5 progressive forms, age (mean ± SD) 40.7 ± 9.1 years, Expanded Disability Status Scale (EDSS) score 1.6 ± 1.7] and 20 normal controls by high-resolution cerebrospinal MRI. CLs required visibility on both fluid-attenuated inversion-recovery (FLAIR) and modified driven equilibrium Fourier transform sequences. The MACFIMS battery defined cognitively impaired (n = 18) vs. preserved (n = 33) MS subgroups. Results: EDSS significantly correlated with only BPF, UCCA, MRDSS2, and MRDSS3 (all p < 0.05). After adjusting for depressive symptoms, the cognitively impaired group had higher severity of MRI metrics than the cognitively preserved group in regard to only BPF, GMF, T1/T2, MRDSS1, and MRDSS2 (all p < 0.05). CL number was not significantly related to EDSS score or cognition status. Conclusion: CLs from 3T MRI did not appear to improve the validity of the MRDSS. Further studies employing advanced sequences or higher field strengths may show more utility for the incorporation of CLs into composite scales

    Family-Based Youth Mental Health Interventions Delivered by Nonspecialist Providers in Low- and Middle-Income Countries: A Systematic Review

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    IntroductionYouth in low- and middle-income countries (LMICs) are at increased risk for poor mental health due to economic and social disadvantage. Interventions that strengthen families may equip children and adolescents with the supports and resources to fulfill their potential and buffer them from future stressors and adversity. Due to human resource constraints, task-sharing-delivery of interventions by nonspecialists-may be an effective strategy to facilitate the dissemination of mental health interventions in low resource contexts. To this end, we conducted a systematic review of the literature on family-based interventions delivered in LMICs by nonspecialist providers (NSPs) targeting youth mental health and family related outcomes.MethodCochrane and PRISMA procedures guided this review. Searches were conducted in PsychInfo, PubMed, and Web of Science, with additional articles pulled from reference lists.ResultsThis search yielded 10 studies. Four studies were developed specifically for the delivery context using formative qualitative research; the remaining interventions underwent adaptation for use in the context. All interventions employed a period of structured training; nine studies additionally provided ongoing supervision to counselors. Interventions noted widespread acceptance of program material and delivery by NSPs. They also noted the need for ongoing supervision of NSPs to increase treatment fidelity.DiscussionUsage of NSPs is quite consistently proving feasible, acceptable, and efficacious and is almost certainly a valuable component within approaches to scaling up mental health programs. A clear next step is to establish and evaluate sustainable models of training and supervision to further inform scalability. (PsycINFO Database Recor
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