Dataset Information

Comparison of an Online-Only Parkinson's Disease Research Cohort to Cohorts Assessed In Person.

ABSTRACT:

Background

Online tools for data collection could be of value in patient-oriented research. The Fox Insight (FI) study collects data online from individuals with self-reported Parkinson's disease (PD). Comparing the FI cohort to other cohorts assessed through more traditional (in-person) observational research studies would inform the representativeness and utility of FI data.

Objective

To compare self-reported demographic characteristics, symptoms, medical history, and PD medication use of the FI PD cohort to other recent observational research study cohorts assessed with in-person visits.

Methods

The FI PD cohort (n = 12,654) was compared to 3 other cohorts, selected based on data accessibility and breadth of assessments: Parkinson's Progression Markers Initiative (PPMI; PD n = 422), Parkinson's Disease Biomarker Program (PDBP; n = 700), and PD participants in the LRRK2 consortium without LRRK2 mutations (n = 508). Demographics, motor and non-motor assessments, and medications were compared across cohorts. Where available, identical items on surveys and assessments were compared; otherwise, expert opinion was used to determine comparable definitions for a given variable.

Results

The proportion of females was significantly higher in FI (45.56%) compared to PPMI (34.36%) and PDBP (35.71%). The FI cohort had greater educational attainment as compared to all other cohorts. Overall, prevalence of difficulties with motor experiences of daily living and non-motor symptoms in the FI cohort was similar to other cohorts, with only a few significant differences that were generally small in magnitude. Missing data were rare for the FI cohort, except on a few variables.

Discussion

Patterns of responses to patient-reported assessments obtained online on the PD cohort of the FI study were similar to PD cohorts assessed in-person.

SUBMITTER: Chahine LM

PROVIDER: S-EPMC7242834 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Publications

Comparison of an Online-Only Parkinson's Disease Research Cohort to Cohorts Assessed In Person.

Chahine Lana M LM Chin Iris I Caspell-Garcia Chelsea C Standaert David G DG Brown Ethan E Smolensky Luba L Arnedo Vanessa V Daeschler Daisy D Riley Lindsey L Korell Monica M Dobkin Roseanne R Amondikar Ninad N Gradinscak Stephen S Shoulson Ira I Dean Marissa M Kwok Kevin K Cannon Paul P Marek Kenneth K Kopil Catherine C Tanner Caroline M CM Marras Connie C

Journal of Parkinson's disease 20200101 2

<h4>Background</h4>Online tools for data collection could be of value in patient-oriented research. The Fox Insight (FI) study collects data online from individuals with self-reported Parkinson's disease (PD). Comparing the FI cohort to other cohorts assessed through more traditional (in-person) observational research studies would inform the representativeness and utility of FI data.<h4>Objective</h4>To compare self-reported demographic characteristics, symptoms, medical history, and PD medicat ...[more]

PMID: 31958097

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Project description:BackgroundRare disease research is hampered in part by the fact that patients are geographically dispersed. Rare disease patient communities are recognized for their use of the internet to learn about their condition and find peer-to-peer support. As such, web-based technologies offer promise for overcoming geographic barriers in rare disease research for many. Qualitative focus groups (FGs) are a widely used methodology used to understand patients and parents/families 'lived experience' and unmet needs is important to improve care for rare diseases. It is unclear if web-enabled (virtual) FGs are comparable to traditional in-person approaches. We conducted in-person (n = 3) and virtual (n = 3) FGs with rare disease patients to determine if virtual FGs produce similar results in-person FGs.ResultsThree in-person (n = 33 participants) and three virtual (n = 25 participants) FGs were conducted examining attitudes and beliefs regarding genetic testing and family communication of risk. Participants included 30 males, 18 females, and 10 parents/guardians. Two independent investigators identified excerpts (meaningful sections of text) and coded themes/sub-themes using a codebook. Inter-coder agreement across identified excerpts (n = 530) in both FG formats was 844/875 (96.5%). Two additional investigators reviewed coded excerpts and did not identify additional themes/sub-themes-supporting data saturation across FG formats. Virtual FGs accounted for 303/530 (57.2%) of total excerpts and 957/1721 (55.7%) of all identified themes/sub-themes. Formats were similar in terms of overall number of excerpts (101 ± 7.8 vs. 75.7 ± 18.8, p = 0.26) and themes/sub-themes (319 ± 6.1 vs. 254.7 ± 103.6, p = 0.34) between virtual and in-person FGs. However, virtual FGs had significantly more coded excerpts specifically relating to sensitive/intimate topics including 'attitudes and beliefs' (n = 320 vs. n = 235, p < 0.001), 'information and support' (n = 184 vs. n = 99, p < 0.001), and 'family communication' (n = 208 vs. n = 114, p < 0.001).ConclusionsVirtual FGs yielded similar numbers of coded excerpts compared to traditional in-person FGs. Virtual FGs appear to support the relative anonymity of participants, resulting in richer discussion of highly sensitive, intimate topics. Findings support the validity and methodologic rigor of using web-enabled technologies for conducting FGs in rare diseases.

Project description:BackgroundSome pulse oximeters perform worse in people with darker skin, and this may be due to inadequate diversity of skin pigment in device development study cohorts. Guidance is needed to accurately and equitably characterize skin pigment to ensure diversity in research cohorts. We tested multiple methods for characterizing skin pigment to assess comparability and impact on cohort diversity.ObjectivesAssess reliability and comparability of common skin pigment measurement methodsCompare findings from different anatomical sitesDemonstrate that pigment cannot be assumed from US National Institutes for Health (NIH) race categories.MethodsWe used three subjective methods (perceived Fitzpatrick pFP, Monk Skin Tone MST and Von Luschan VL) and two objective methods (Konica Minolta CM-700d spectrophotometer and Delfin Skin Color Catch DSCC colorimeter) for individual typology angle (ITA), across multiple measurement sites in adults. We calculated ΔE to estimate operator perceptibility thresholds for subjective methods and to determine reproducibility for objective methods. We used each method to categorize participants as 'light, medium, or dark' and compared the impact of method selection on cohort diversity.ResultsWe studied 789 participants, with 33,856 assessments. The MST had the widest luminosity range, and VL had the least discernible adjacent categories. With 'dark' defined as ITA <-30°, 14% of participants were categorized 'dark' as compared to 26% by pFP or 16% by MST. Approximately half of the 'dark' cohort had an ITA <-50°. With an ITA threshold <-50°, only 7% of the cohort was categorized as 'dark.' When 'Black or African American' self-identification was used to define 'dark', 23% of the cohort was categorized as such. Each self-assigned NIH race category included a wide range of ITA and subjective scale categories. Both ITA and L* from the KM-700d and DSCC demonstrated strong correlation (ρ > 0.7).ConclusionCommon methods for skin pigment characterization, especially the use of race or subjective scales, have significant limitations. When applied to the same cohort, different methods yield significantly different results, and some may overestimate diversity. Previously published ITA thresholds for defining 'dark' skin are too light and lead to underrepresentation of people with darker skin.

Dataset Information

Comparison of an Online-Only Parkinson's Disease Research Cohort to Cohorts Assessed In Person.

Background

Objective

Methods

Results

Discussion

Publications

Comparison of an Online-Only Parkinson's Disease Research Cohort to Cohorts Assessed In Person.

Similar Datasets

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