Dataset Information

Fibromyalgia Impact Reduction Using Online Personal Health Informatics: Longitudinal Observational Study.

ABSTRACT: BACKGROUND:Personal health informatics have the potential to help patients discover personalized health management strategies that influence outcomes. Fibromyalgia (FM) is a complex chronic illness requiring individualized strategies that may be informed by analysis of personal health informatics data. An online health diary program with dynamic feedback was developed to assist patients with FM in identifying symptom management strategies that predict their personal outcomes, and found reduced symptom levels associated with program use. OBJECTIVE:The aim of this study was to determine longitudinal associations between program use and functional impact of FM as measured by scores on a standardized assessment instrument, the Fibromyalgia Impact Questionnaire (FIQ). METHODS:Participants were self-identified as diagnosed with FM and recruited via online FM advocacy websites. Participants used an online health diary program ("SMARTLog") to report symptom ratings, behaviors, and management strategies used. Based on single-subject analysis of the accumulated data over time, individualized recommendations ("SMARTProfile") were then provided by the automated feedback program. Indices of program use comprised of cumulative numbers of SMARTLogs completed and SMARTProfiles received. Participants included in this analysis met a priori criteria of sufficient program use to generate SMARTProfiles (ie, ?22 SMARTLogs completed). Users completed the FIQ at baseline and again each subsequent month of program use as follow-up data for analysis. Kendall tau-b, a nonparametric statistic that measures both the strength and direction of an ordinal association between two repeated measured variables, was computed between all included FIQ scores and both indices of program use for each subject at the time of each completed FIQ. RESULTS:A total of 76 users met the a priori use criteria. The mean baseline FIQ score was 61.6 (SD 14.7). There were 342 FIQ scores generated for longitudinal analysis via Kendall tau-b. Statistically significant inverse associations were found over time between FIQ scores and (1) the cumulative number of SMARTLogs completed (tau-b=-0.135, P<.001); and (2) the cumulative number of SMARTProfiles received (tau-b=-0.133, P<.001). Users who completed 61 or more SMARTLogs had mean follow-up scores of 49.9 (n=25, 33% of the sample), an 18.9% drop in FM impact. Users who generated 11 or more new SMARTProfiles had mean follow-up scores of 51.8 (n=23, 30% of the sample), a 15.9% drop. CONCLUSIONS:Significant inverse associations were found between FIQ scores and both indices of program use, with FIQ scores declining as use increased. Based on established criteria for rating FM severity, the top one-third of users in terms of use had clinically significant reductions from "severe" to "moderate" FM impact. These findings underscore the value of self-management interventions with low burden, high usability, and high perceived relevance to the user. TRIAL REGISTRATION:ClinicalTrials.gov NCT02515552; https://clinicaltrials.gov/ct2/show/NCT02515552.

SUBMITTER: Collinge W

PROVIDER: S-EPMC7175184 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Fibromyalgia Impact Reduction Using Online Personal Health Informatics: Longitudinal Observational Study.

Collinge William W Soltysik Robert R Yarnold Paul P

Journal of medical Internet research 20200407 4

<h4>Background</h4>Personal health informatics have the potential to help patients discover personalized health management strategies that influence outcomes. Fibromyalgia (FM) is a complex chronic illness requiring individualized strategies that may be informed by analysis of personal health informatics data. An online health diary program with dynamic feedback was developed to assist patients with FM in identifying symptom management strategies that predict their personal outcomes, and found r ...[more]

PMID: 32131045

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Project description:BACKGROUND:With abundant personal health information at hand, individuals are faced with a critical challenge in evaluating the informational value of health care records to keep useful information and discard that which is determined useless. Young, healthy college students who were previously dependents of adult parents or caregivers are less likely to be concerned with disease management. Personal health information management (PHIM) is a special case of personal information management (PIM) that is associated with multiple interactions among varying stakeholders and systems. However, there has been limited evidence to understand informational or behavioral underpinning of the college students' PHIM activities, which can influence their health in general throughout their lifetime. OBJECTIVE:This study aimed to investigate demographic and academic profiles of college students with relevance to PHIM activities. Next, we sought to construct major PHIM-related activity components and perceptions among college students. Finally, we sought to discover major factors predicting core PHIM activities among college students we sampled. METHODS:A Web survey was administered to collect responses about PHIM behaviors and perceptions among college students from the University of Kentucky from January through March 2017. A total of 1408 college students were included in the analysis. PHIM perceptions, demographics, and academic variations were used as independent variables to predict diverse PHIM activities using a principal component analysis (PCA) and hierarchical regression analyses (SPSS v.24, IBM Corp, Armonk, NY, USA). RESULTS:Majority of the participants were female (956/1408, 67.90%), and the age distribution of this population included an adequate representation of college students of all ages. The most preferred health information resources were family (612/1408, 43.47%), health care professionals (366/1408, 26.00%), friends (27/1408, 1.91%), and the internet (157/1408, 11.15%). Organizational or curatorial activities such as Arranging, Labeling, Categorizing, and Discarding were rated low (average=3.21, average=3.02, average=2.52, and average=2.42, respectively). The PCA results suggested 3 components from perception factors labeled as follows: Assistance (alpha=.85), Awareness (alpha=.716), and Difficulty (alpha=.558). Overall, the Demographics and Academics variables were not significant in predicting dependent variables such as Labeling, Categorizing, Health Education Materials, and Discarding, whereas they were significant for other outcome variables such as Sharing, Collecting, Knowing, Insurance Information, Using, and Owning. CONCLUSIONS:College years are a significant time for students to learn decision-making skills for maintaining information, a key aspect of health records, as well as for educators to provide appropriate educational and decision aids in the environment of learning as independent adults. Our study will contribute to better understand knowledge about specific skills and perceptions for college students' practice of effective PHIM throughout their lives.

Project description:BackgroundFacebook's advertising platform reaches most US households and has been used for health-related research recruitment. The platform allows for advertising segmentation by age, gender, and location; however, it does not explicitly allow for targeting by race or ethnicity to facilitate a diverse participant pool.ObjectiveThis study looked at the efficacy of zip code targeting in Facebook advertising to reach blacks/African Americans and Hispanics/Latinos who smoke daily for a quit-smoking web-based social media study.MethodsWe ran a general market campaign for 61 weeks using all continental US zip codes as a baseline. Concurrently, we ran 2 campaigns to reach black/African American and Hispanic-/Latino-identified adults, targeting zip codes ranked first by the percentage of households of the racial or ethnic group of interest and then by cigarette expenditure per household. We also ran a Spanish language campaign for 13 weeks, targeting all continental US zip codes but utilizing Facebook's Spanish language targeting. The advertising images and language were common across campaigns. Costs were compared for advertisement clicks, queries, applications, and participants, and yields were compared for the final three outcomes. We examined outcomes before and after the Cambridge Analytica scandal that broke in March 2018. Finally, we examined 2 promoted Facebook features: lookalike audiences and audience network placement.ResultsZip code targeting campaigns were effective for yielding the racial or ethnic groups of interest. The black-/African American-focused versus general market campaign increased black/African American weekly queries (mean 9.48, SD 5.69 vs general market mean 2.83, SD 2.05; P<.001) and applicants (mean 1.11, SD 1.21 vs general market mean 0.54, SD 0.58; P<.001). The Hispanic-/Latino-focused versus general market campaign increased Hispanic/Latino weekly queries (mean 3.10, SD 2.16 vs general market mean 0.71, SD 0.48; P<.001) and applicants (mean 0.36, SD 0.55 vs general market mean 0.10, SD 0.14; P=.001). Cost metrics did not differ between campaigns at generating participants (overall P=.54). Costs increased post- versus prescandal for the black-/African American-focused campaign for queries (mean US $8.51, SD 3.08 vs US $5.87, SD 1.89; P=.001) and applicants (mean US $59.64, SD 35.63 vs US $38.96, SD 28.31; P=.004) and for the Hispanic-/Latino-focused campaign for queries (mean US $9.24, SD 4.74 vs US $7.04, SD 3.39; P=.005) and applicants (mean US $61.19, SD 40.08 vs US $38.19, SD 21.20; P=.001).ConclusionsZip code targeting in Facebook advertising is an effective way to recruit diverse populations for health-based interventions. Audience network placement should be avoided. The Facebook lookalike audience may not be necessary for recruitment, with drawbacks including an unknown algorithm and unclear use of Facebook user data, and so public concerns around data privacy should be considered.Trial registrationClinicalTrial.gov NCT02823028; https://clinicaltrials.gov/ct2/show/NCT02823028.

Dataset Information

Fibromyalgia Impact Reduction Using Online Personal Health Informatics: Longitudinal Observational Study.

Publications

Fibromyalgia Impact Reduction Using Online Personal Health Informatics: Longitudinal Observational Study.

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