Authors' contributions JY and GS conceived of the study, participated in its design and coordination, and contributed to the drafting and editing of the manuscript. DR scoped and led participant research, prototype design and testing, and drafted the manuscript. BB scoped and contributed to participant research, prototype design and testing, and editing of the manuscript. JL led recruitment and coordination of patient and provider participants, participated in participant research and prototyping, and contributed to drafting of the manuscript. LT participated in the design and coordination of the study and helped draft the manuscript. JG contributed to research and prototyping data synthesis and drafting of the manuscript. MM contributed to the participant research and helped draft the manuscript. DECLARATIONS Ethical approval and consent to participate We obtained informed consent for all participants in this study. The UCSF institutional review board approved this study protocol. The IRB reference number is 15-18282. Consent to publish Not applicable Availability of data and materials The datasets generated and/or analyzed during the current study are not publicly available due to patient confidentiality but are available from the corresponding author on reasonable request.
Objective People with long-term conditions require serial clinical assessments. Digital patient-reported symptoms collected between visits can inform these, especially if integrated into electronic health records (EHRs) and clinical workflows. This systematic review identified and summarized EHR-integrated systems to remotely collect patient-reported symptoms and examined their anticipated and realized benefits in long-term conditions. Materials and Methods We searched Medline, Web of Science, and Embase. Inclusion criteria were symptom reporting systems in adults with long-term conditions; data integrated into the EHR; data collection outside of clinic; data used in clinical care. We synthesized data thematically. Benefits were assessed against a list of outcome indicators. We critically appraised studies using the Mixed Methods Appraisal Tool. Results We included 12 studies representing 10 systems. Seven were in oncology. Systems were technically and functionally heterogeneous, with the majority being fully integrated (data viewable in the EHR). Half of the systems enabled regular symptom tracking between visits. We identified 3 symptom report-guided clinical workflows: Consultation-only (data used during consultation, n = 5), alert-based (real-time alerts for providers, n = 4) and patient-initiated visits (n = 1). Few author-described anticipated benefits, primarily to improve communication and resultant health outcomes, were realized based on the study results, and were only supported by evidence from early-stage qualitative studies. Studies were primarily feasibility and pilot studies of acceptable quality. Discussion and Conclusions EHR-integrated remote symptom monitoring is possible, but there are few published efforts to inform development of these systems. Currently there is limited evidence that this improves care and outcomes, warranting future robust, quantitative studies of efficacy and effectiveness.
Inclusion of patient-reported outcomes is important in SLE clinical trials as they allow capture of the benefits of a proposed intervention in areas deemed pertinent by patients. We aimed to compare the measurement properties of health-related quality of life (HRQoL) measures used in adults with SLE and to evaluate their responsiveness to interventions in randomised controlled trials (RCTs). A systematic review was undertaken using full original papers in English identified from three databases: MEDLINE, EMBASE and PubMed. Studies describing the validation of HRQoL measures in English-speaking adult patients with SLE and SLE drug RCTs that used an HRQoL measure were retrieved. Twenty-five validation papers and 26 RCTs were included in the indepth review evaluating the measurement properties of 4 generic (Medical Outcomes Study Short-Form 36 (SF36), Patient Reported Outcomes Measurement Information System (PROMIS) item-bank, EuroQol-5D, and Functional Assessment of Chronic Illness Therapy-Fatigue) and 3 disease-specific (Lupus Quality of Life (LupusQoL), Lupus Patient Reported Outcomes, Lupus Impact Tracker (LIT)) instruments. All measures had good convergent and discriminant validity. PROMIS provided the strongest evidence for known-group validity and reliability among generic instruments; however, data on its responsiveness have not been published. Across measures, standardised response means were generally indicative of poor-moderate sensitivity to longitudinal change. In RCTs, clinically important improvements were reported in SF36 scores from baseline; however, between-arm differences were frequently non-significant and non-important. SF36, PROMIS, LupusQoL and LIT had the strongest evidence for acceptable measurement properties, but few measures aside from the SF36 have been incorporated into clinical trials. This review highlights the importance of incorporating a broader range of SLE-specific HRQoL measures in RCTs and warrants further research that focuses on longitudinal responsiveness of newer instruments.
Background Consistent evidence suggests a relationship between lower educational attainment and total obesity defined using body mass index (BMI); however, a comparison of the relationships between educational attainment and total obesity (BMI ≥30 kg/m 2 ) and central obesity (waist circumference (WC) > 102 cm for men and WC > 88 cm for women) has yet to be carried out. This systematic literature review (SLR) and meta-analyses aimed to understand whether i) the associations between education and obesity are different depending on the measures of obesity used (BMI and WC), and ii) to explore whether these relationships differ by gender and region. Methods Medline, Embase and Web of Science were searched to identify studies investigating the associations between education and total and central obesity among adults in the general population of countries in the Organisation for Economic Co-operation and Development (OECD). Meta-analyses and meta-regression were performed in a subset of comparable studies (n=36 studies; 724,992 participants). Results 86 eligible studies (78 cross-sectional and eight longitudinal) were identified. Among women, most studies reported an association between a lower education and total and central obesity. Among men, there was a weaker association between lower education and central than total obesity (OR central vs total obesity in men 0.79 (95% CI 0.60, 1.03)). The association between lower education and obesity was stronger in women compared with men (OR women vs men 1.66 (95% CI 1.32, 2.08)). The relationship between lower education and obesity was less strong in women from Northern than Southern Europe (OR Northern vs Southern Europe in women 0.37 (95% CI 0.27, 0.51)), but not among men. Conclusions Associations between education and obesity differ depending on whether total or central obesity is used among men, but not in women. These associations are stronger among women than men, particularly in Southern European countries.
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