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.

Keywords: (3–5) ICT; Apps, applications; CIndU, chronic inducible urticaria; CSU, chronic spontaneous urticaria; CU, chronic urticaria; HCP, healthcare provider; ICT, information and communications technologies; Information and communications technology; SEM, self-management education; SMS, short messaging service; Self-management; UAE, United Arab Emirates; UCARE, Urticaria Centers of Reference and Excellence; Urticaria.

Conflict of interest statement

M Maurer is or recently was a speaker and/or advisor for, and/or has received research funding from: Allakos, Alnylam, Aralez, AstraZeneca, Biocryst, Blueprint, CSL Behring, FAES, Genentech, Kalvista Pharmaceuticals, LEO Pharma, Menarini, Moxie, MSD, Novartis, Pharming, Pharvaris, Roche, Sanofi, Shire/Takeda, UCB, and Uriach. K Weller is or recently was a speaker and/or advisor for, and/or has received research funding from: Biocryst, CSL Behring, Dr. Pfleger, FAES, Moxie, Novartis, Shire/Takeda, and Uriach. M Magerl is or recently was a speaker and/or advisor for, and/or has received research funding from Biocryst, CSL Behring, Kalvista Pharmaceuticals, Moxie, Novartis, Pharming, and Shire/Takeda. RR Maurer has no conflicts of interest. E Vanegas has no conflicts of interest. M Felix has no conflicts of interest. A Cherrez has no conflicts of interest. VL Mata has no conflicts of interest. A Kasperska-Zajac has no conflicts of interest. A Sikora has no conflicts of interest. D Fomina is or recently was a speaker and/or advisor for, and/or has received research funding from: AstraZeneca, CSL Behring, Glaxo SmithKline, MSD, Novartis, Sanofi, and Shire/Takeda. E Kovalkova has no conflicts of interest. K Godse has no conflicts of interest. N Dheeraj Rao has no conflicts of interest. M Khoshkhui has no conflicts of interest. S Rastgoo has no conflicts of interest. RFJ Criado has no conflicts of interest. M Abuzakouk has no conflicts of interest. D Grandon has no conflicts of interest. M van Doorn is or recently was a speaker and/or advisor for, and/or has received research funding from Abbvie, BMS, Celgene, Janssen Cilag, LEO Pharma, Lilly, MSD, Novartis, Pfizer, and Sanofi-Genzyme. S Valle has no conflicts of interest. E Magalhães de Souza Lima has no conflicts of interest. SF Thomsen is or recently was a speaker and/or advisor for, and/or has received research funding from: Abbvie, AstraZeneca, Celgene, Eli Lilly, Janssen, LEO Pharma, Novartis, Pierre Fabre, Roche, Sanofi, and UCB. GD Ramón has no conflicts of interest. EE Matos Benavides has no conflicts of interest. A Bauer has no conflicts of interest. Ana M Giménez-Arnau has held roles as a Medical Advisor for Sanofi and Uriach, and has research grants supported by Instituto Carlos III- FEDER, Novartis, and Uriach; she also participates in educational activities for Almirall, Genentech, Glaxo SmithKline, LEO Pharma, Menarini, MSD, Novartis, Sanofi, and Uriach. E Kocatürk is or recently was a speaker and/or advisor for Bayer, Novartis, and Sanofi. C Guillet has no conflicts of interest. JI Larco is or recently was a speaker and/or advisor for: FAES, Novartis, and Sanofi. Z-T Zhao has no conflicts of interest. M Makris is or recently was a speaker and/or advisor for, and/or has received research funding from AstraZeneca, Chiesi, Glaxo SmithKline, Novartis, and Sanofi. C Ritchie has no conflicts of interest. P Xepapadak reports personal fees from Galenica Greece, Glaxo SmithKline, Nestle, Novartis, Nutricia, and Uriach, outside the submitted work. LF Ensina is or recently was a speaker and/or advisor for, and/or has received research funding from Novartis, Sanofi, and Takeda. S Cherrez has no conflicts of interest. I Cherrez-Ojeda has no conflicts of interest.

© 2020 Published by Elsevier Inc. on behalf of World Allergy Organization.

Figures

Fig. 1

Patients were asked how often they used each ICT for any purpose (SMS, WhatsApp, Skype, email [one-to-one]; YouTube, web browsers, blogs or forums [one-to-many]; Instagram, Twitter, Facebook, LinkedIn [many-to-many]) by ticking one of the following boxes: never, less than once a month, at least once a month, at least once a week, and every day. The results were grouped by ICT category for the purposes of analysis. Missing information is not included in the computation of proportions.

Fig. 2

Patients were asked how often they used each ICT for any purpose (SMS, WhatsApp, Skype, email, YouTube, web browsers, blogs or forums, Instagram, Twitter, Facebook, and LinkedIn) by ticking one of the following boxes: never, less than once a month, at least once a month, at least once a week, every day. The graph shows the percentage of patients and the table shows the number of patients who ticked each box. Missing information is not included in the computation of proportions.

Fig. 3

Patients were asked if they had used any of the following types of media to obtain information on their health and medical problems, or specifically to obtain information about urticaria; they could mark options for general health information and CU-specific information: SMS, WhatsApp, Skype, email, YouTube, web browsers, blogs or forums, Instagram, Twitter, Facebook, and LinkedIn. Analyses of all patients, proportions are provided. Missing information is not included in the computation of proportions.

Fig. 4

If patients had answered yes for using any type of media to obtain information about their health and medical problems or urticaria, the were asked how they rated the quality of information they obtained using one of the following categories: 1) not interesting, not helpful, very low quality; 2) slightly interesting, somewhat helpful, low quality; 3) moderately interesting and helpful, medium quality; 4) very interesting and helpful, good quality; 5) extremely interesting and helpful, very good quality. Data shown are for platforms that patients rated as very or extremely interesting/of good or very good quality A. by ICT category and B. by ICT platform. All patients were analyzed. Missing information is not included in the computation of proportions.