Dataset Information

The usage, quality and relevance of information and communications technologies in patients with chronic urticaria: A UCARE study.

ABSTRACT: Background:Chronic urticaria (CU) is characterized by itchy recurrent wheals, angioedema, or both for 6 weeks or longer. CU can greatly impact patients' physical and emotional quality of life. Patients with chronic conditions are increasingly seeking information from information and communications technologies (ICTs) to manage their health. The objective of this study was to assess the frequency of usage and preference of ICTs from the perspective of patients with CU. Methods:In this cross-sectional study, 1800 patients were recruited from primary healthcare centers, university hospitals or specialized clinics that form part of the UCARE (Urticaria Centers of Reference and Excellence) network throughout 16 countries. Patients were >12 years old and had physician-diagnosed chronic spontaneous urticaria (CSU) or chronic inducible urticaria (CIndU). Patients completed a 23-item questionnaire containing questions about ICT usage, including the type, frequency, preference, and quality, answers to which were recorded in a standardized database at each center. For analysis, ICTs were categorized into 3 groups as follows: one-to-one: SMS, WhatsApp, Skype, and email; one-to-many: YouTube, web browsers, and blogs or forums; many-to-many: Instagram, Twitter, Facebook, and LinkedIn. Results:Overall, 99.6% of CU patients had access to ICT platforms and 96.7% had internet access. Daily, 85.4% patients used one-to-one ICT platforms most often, followed by one-to-many ICTs (75.5%) and many-to-many ICTs (59.2%). The daily ICT usage was highest for web browsers (72.7%) and WhatsApp (70.0%). The general usage of ICT platforms increased in patients with higher levels of education. One-to-many was the preferred ICT category for obtaining general health information (78.3%) and for CU-related information (75.4%). A web browser (77.6%) was by far the most commonly used ICT to obtain general health information, followed by YouTube (25.8%) and Facebook (16.3%). Similarly, for CU-specific information, 3 out of 4 patients (74.6%) used a web browser, 20.9% used YouTube, and 13.6% used Facebook. One in 5 (21.6%) patients did not use any form of ICT for obtaining information on CU. The quality of the information obtained from one-to-many ICTs was rated much more often as very interesting and of good quality for general health information (53.5%) and CU-related information (51.5%) as compared to the other categories. Conclusions:Usage of ICTs for health and CU-specific information is extremely high in all countries analyzed, with web browsers being the preferred ICT platform.

SUBMITTER: Maurer M

PROVIDER: S-EPMC7606865 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

The usage, quality and relevance of information and communications technologies in patients with chronic urticaria: A UCARE study.

Maurer Marcus M Weller Karsten K Magerl Markus M Maurer Rasmus Robin RR Vanegas Emanuel E Felix Miguel M Cherrez Annia A Mata Valeria L VL Kasperska-Zajac Alicja A Sikora Agnieszka A Fomina Daria D Kovalkova Elena E Godse Kiran K Rao Nimmagadda Dheeraj ND Khoshkhui Maryam M Rastgoo Sahar S Criado Roberta Fachini Jardim RFJ Abuzakouk Mohamed M Grandon Deepa D van Doorn Martijn M Valle Solange Olliveira Rodrigues SOR de Souza Lima Eduardo Magalhães EM Thomsen Simon Francis SF Ramón German D GD Matos Benavides Edgar E EE Bauer Andrea A Giménez-Arnau Ana Maria AM Kocatürk Emek E Guillet Carole C Ignacio Larco Jose J Zhao Zuo-Tao ZT Makris Michael M Ritchie Carla C Xepapadaki Paraskevi P Ensina Luis Felipe LF Cherrez Sofia S Cherrez-Ojeda Ivan I

The World Allergy Organization journal 20201030 11

<h4>Background</h4>Chronic urticaria (CU) is characterized by itchy recurrent wheals, angioedema, or both for 6 weeks or longer. CU can greatly impact patients' physical and emotional quality of life. Patients with chronic conditions are increasingly seeking information from information and communications technologies (ICTs) to manage their health. The objective of this study was to assess the frequency of usage and preference of ICTs from the perspective of patients with CU.<h4>Methods</h4>In t ...[more]

PMID: 33204387

Similar Datasets

Project description:Chronic spontaneous/idiopathic urticaria (CSU/CIU) has substantial detrimental effects on health-related quality of life (HRQoL) with an effect comparable to or worse than many other skin diseases.To assess the effect of omalizumab on CSU patients' HRQoL, measured by the Dermatology Life Quality Index (DLQI) in three phase III studies ASTERIA I, ASTERIA II and GLACIAL.A post hoc analysis examined changes in DLQI scores, distribution of patients across DLQI bands and the proportion reaching minimal clinically important difference (MCID) following omalizumab vs. placebo.Omalizumab 300 mg significantly improved total DLQI scores vs. placebo, with a mean decrease from baseline to week 12 of -10.3 vs. -6.1 (P < 0.0001) in ASTERIA I, -10.2 vs. -6.1 (P = 0.0004) in ASTERIA II and -9.7 vs. -5.1 (P < 0.0001) in GLACIAL. A significant shift from high disease impact on life at baseline towards less impact at week 12 was seen with omalizumab 300 mg vs. placebo (P < 0.001; all studies). The proportion of patients where change in mean total DLQI score from baseline to week 12 reached an MCID of ?4 was 74.1%, 76.0% and 77.2% in ASTERIA I, II and GLACIAL, respectively (P < 0.01; all studies).Maximum duration of omalizumab treatment was 24 weeks.This additional analysis assessed the impact of CSU and benefit of treatment with omalizumab by exploring different facets of DLQI data by treatment arm at multiple assessment points. The original aspects of analysis included applying the concept of the recently validated score for the MCID of the DLQI, changes in DLQI domain scores and in the distribution of subjects based on validated total DLQI score bands. It showed consistently that omalizumab provides significant and clinically relevant improvements in many aspects of HRQoL that are important to patients with CSU. These results contribute to a better understanding of the impact of CSU and its treatment on patients and can support clinical decision-making in routine medical practice.

Project description:BackgroundChronic urticaria (CU) is a common skin disorder, which can be further divided into chronic spontaneous urticaria (CSU) and chronic inducible urticaria (CIndU). Omalizumab is effective and safe for difficult-to-treat CSU based on clinical trials. However, there are limited data comparing the therapeutic effect of omalizumab for patients with CSU, CIndU, and CSU plus CIndU. Meanwhile, there is still no reliable predictor for treatment response or relapse. Our study was conducted to collect real-world clinical data on omalizumab treatment in patients with CSU, CIndU, and both.MethodsThis was an observational, retrospective chart review of patients with CU initiating omalizumab treatment between February 2018 and May 2020 (maximum 28 months follow-up).ResultsA total of 138 patients were included, 87 with CSU alone, 33 with different forms of CIndU, and 18 with both. A total of 87.0% (n = 120/138) of the CU patients responded to omalizumab therapy, among which 65.2% (n = 90/138) of the patients showed complete response and 21.7% (n = 30/138) of the patients showed partial response. The therapeutic effect and speed of onset of effect for omalizumab were comparable among patients with CSU, CIndU, or both. Autologous serum skin test (ASST)-positive patients were more likely to show a slow response to omalizumab therapy ( P = 0.043). Non-responders had lower baseline total IgE levels (35.0 vs 121.5 kU/L, P < 0.001). The proportion of patients with low total IgE levels in non-responders was significantly higher than that of responders (61.1% vs. 14.5%, P < 0.001). Also, more non-responder patients had elevated thyroid autoantibodies than responders (50.0% vs. 23.0%, P = 0.041). The median ratio of serum IgG-anti-TPO to serum total IgE in non-responders was significantly higher compared with responders (1.22 vs. 0.09, P < 0.001). Non-responders also had shorter treatment periods (4.5 vs 6.0 months, P = 0.035) compared with responders. Two of 3 patients (67.4%, n = 29/43) experienced relapse after ceasing omalizumab therapy. These patients had longer disease durations (52.0 vs. 15.0 months, P = 0.007) and higher baseline total IgE levels (179.9 vs. 72.5 kU/L, P = 0.020) than patients who did not relapse. We reinitiated omalizumab treatment for 10 relapsed patients, all of them reported a rapid response after the first injection within the first 4 weeks of retreatment.ConclusionOmalizumab is highly effective in patients with difficult-to-treat CSU, CIndU, or both. Responders tend to have unique immunological features and longer treatment periods. Patients with higher baseline total IgE levels and longer disease durations are more likely to experience rapid relapse after discontinuation of omalizumab.

Project description:BackgroundDigital health technologies (DHTs) generate a large volume of information used in health care for administrative, educational, research, and clinical purposes. The clinical use of digital information for diagnostic, therapeutic, and prognostic purposes has multiple patient safety problems, some of which result from poor information quality (IQ).ObjectiveThis systematic review aims to synthesize an IQ framework that could be used to evaluate the extent to which digital health information is fit for clinical purposes.MethodsThe review was conducted according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines. We searched Embase, MEDLINE, PubMed, CINAHL, Maternity and Infant Care, PsycINFO, Global Health, ProQuest Dissertations and Theses Global, Scopus, and HMIC (the Health Management Information Consortium) from inception until October 2019. Multidimensional IQ frameworks for assessing DHTs used in the clinical context by health care professionals were included. A thematic synthesis approach was used to synthesize the Clinical Information Quality (CLIQ) framework for digital health.ResultsWe identified 10 existing IQ frameworks from which we developed the CLIQ framework for digital health with 13 unique dimensions: accessibility, completeness, portability, security, timeliness, accuracy, interpretability, plausibility, provenance, relevance, conformance, consistency, and maintainability, which were categorized into 3 meaningful categories: availability, informativeness, and usability.ConclusionsThis systematic review highlights the importance of the IQ of DHTs and its relevance to patient safety. The CLIQ framework for digital health will be useful in evaluating and conceptualizing IQ issues associated with digital health, thus forestalling potential patient safety problems.Trial registrationPROSPERO International Prospective Register of Systematic Reviews CRD42018097142; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=97142.International registered report identifier (irrid)RR2-10.1136/bmjopen-2018-024722.

Project description:BACKGROUND:The recommended first-line therapy of chronic urticaria is second-generation antihistamines, but the modalities of treatment remains unclear. Numerous recommendations with heterogeneous conclusions have been published. We wondered whether such heterogeneous conclusions were linked to the quality of published studies and their reporting. OBJECTIVE:To review the study design and quality of reporting of randomized control trials investigating pharmacological treatment of autoimmune or idiopathic chronic urticaria. METHODOLOGY/PRINCIPAL FINDINGS:MEDLINE and EMBASE were searched for pharmacological randomized controlled trials involving patients with chronic autoimmune or idiopathic urticaria, with the main outcome being treatment efficacy. Data were collected on general characteristics of the studies, internal validity, studied treatments, design of the trial, outcome measures and "spin" strategy in interpreting results. Spin was defined as use of specific reporting strategies to highlight that the experimental treatment is beneficial, despite statistically nonsignificant results. We evaluated 52 articles that met our criteria. Patients were reported as blinded in 42 articles (81%) and the outcome assessor was blinded in 37 (71%). A placebo was the only comparator in 13 (25%) studies. The study duration was <8 weeks in 39 articles (75%), with no follow-up after discontinuation of treatment in 37 (71%). In 4 articles (8%), blinding was clear because they described blinding of the outcome assessor, the treatment was not recognizable (identical or double-dummy) or had no major secondary effects, and computed randomization was centralized. The primary outcome was specified in 33 articles (63%) and was a score in 31. In total, 15 different scores were used. A spin strategy was used for 10 of 12 studies with a nonsignificant primary outcome. CONCLUSION:For establishing guidelines in treatment of chronic urticaria, studies should focus on choosing clinically relevant and reproducible primary outcomes, long-term follow-up, limited use of placebo and avoiding spin strategies.

Project description:BackgroundThe instantaneous spread of information, low costs, and broad availability of information and communication technologies (ICTs) make them an attractive platform for managing care, patient communication, and medical interventions in cancer treatment. There is little information available in Latin America about the level of usage of ICTs for and by cancer patients. Our study attempts to fill this gap.ObjectiveThe aim of this study was to assess the level of ICT use and patterns of preferences among cancer patients.MethodsWe conducted an anonymous cross-sectional survey study in 500 Ecuadorian cancer patients. This questionnaire consisted of 22 items about demographic and clinical data, together with the preferences of people who use ICTs. Chi-square, crude, and adjusted logistic regressions were performed.ResultsOf the total, 43.2% (216/500) of participants reported that they had access to the Internet, and 25.4% (127/500) reported that they neither owned a cell phone nor did they have access to the Internet. The Internet constituted the highest usage rate as a source of information about malignant diseases (74.3%, 162/218) regardless of age (P<.001). With regard to the preferences on how patients would like to use ICTs to receive information about diseases, WhatsApp (66.5%, 145/218) and short message service (SMS) text messaging (61.0%, 133/218) were widely reported as interesting communication channels. Similarly, WhatsApp (72.0%, 157/218) followed by SMS (63.8%, 139/218) were reported as the preferred ICTs through which patients would like to ask physicians about diseases. Adjusted regression analysis showed that patients aged between 40 and 64 years were more likely to be interested in receiving information through SMS (odds ratio, OR 5.09, 95% CI 1.92-13.32), as well as for asking questions to physicians through this same media (OR 9.78, CI 3.45-27.67) than the oldest group.ConclusionsWhatsApp, SMS, and email are effective and widely used ICTs that can promote communication between cancer patients and physicians. According to age range, new ICTs such as Facebook are still emerging. Future studies should investigate how to develop and promote ICT-based resources more effectively to engage the outcomes of cancer patients. The widespread use of ICTs narrows the gap between cancer patients with restricted socioeconomic conditions and those with wealth and easily available technological means, thereby opening up new possibilities in low-income countries.

Dataset Information

The usage, quality and relevance of information and communications technologies in patients with chronic urticaria: A UCARE study.

Publications

The usage, quality and relevance of information and communications technologies in patients with chronic urticaria: A UCARE study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets