Maurer et al. World Allergy Organization Journal (2020) 13:100475 http://doi.org/10.1016/j.waojou.2020.100475 Open Access The usage, quality and relevance of information and communications technologies in patients with chronic urticaria: A UCARE study Marcus Maurera*, Karsten Wellera, Markus Magerla, Rasmus Robin Maurera, Emanuel Vanegasb,c, Miguel Felixb,c, Annia Cherrezc,d, Valeria L. Matab,c, Alicja Kasperska-Zajace, Agnieszka Sikorae, Daria Fominaf,g, Elena Kovalkovaf, Kiran Godseh, Nimmagadda Dheeraj Raoh, Maryam Khoshkhuii,j, Sahar Rastgooj, Roberta Fachini Jardim Criadok, Mohamed Abuzakoukl, Deepa Grandonl, Martijn van Doornm, Solange Olliveira Rodrigues Vallen, Eduardo Magalhães de Souza Limao, Simon Francis Thomsenp, German D. Ramónq, Edgar E. Matos Benavidesr, Andrea Bauers, Ana Maria Giménez-Arnaut, Emek Kocatürku, Carole Guilletv, Jose Ignacio Larcow, Zuo-Tao Zhaox, Michael Makrisy, Carla Ritchiez, Paraskevi Xepapadakiaa, Luis Felipe Ensinaab, Sofia Cherrezac,c and Ivan Cherrez-Ojedab,c 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 com- munications 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 a Dermatological Allergology, Allergie-Centrum-Charité, Department of Online publication date xxx Dermatology and Allergy, Charité - Universitätsmedizin Berlin, Germany *Corresponding author. E-mail: marcus.maurer@charite.de 1939-4551/© 2020 Published by Elsevier Inc. on behalf of World Allergy Full list of author information is available at the end of the article Organization. This is an open access article under the CC BY-NC-ND license http://doi.org/10.1016/j.waojou.2020.100475 (http://creativecommons.org/licenses/by-nc-nd/4.0/). Received 10 July 2020; Received in revised from 10 September 2020; Accepted 24 September 2020 2 Maurer et al. World Allergy Organization Journal (2020) 13:100475 http://doi.org/10.1016/j.waojou.2020.100475 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 ob- tained 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, Information and communications technology, Urticaria, Self-management INTRODUCTION associated with long-term conditions.10 With an increasing array of information and Chronic urticaria (CU) is characterized by the communications technologies (ICTs) available to recurrence of itchy wheals, angioedema, or both facilitate SME, many patients use the internet to for more than 6 weeks and is divided into 2 types: obtain information about their disease.11 ICTs in chronic spontaneous urticaria (CSU), which has no healthcare can be defined as digital technologies distinct or definite external trigger,1 and chronic that support the exchange, knowledge transfer, inducible urticaria (CIndU), of which there are and electronic storage and processing of several subtypes and distinct and definite information to promote health, manage chronic external triggers, such as sunlight in solar illness, and treat disease.12,13 They include web urticaria.2 It has been estimated that at any given browsers, emails, forums or blogs, and social time, CSU affects 1% of the global population, media platforms, as well as various mobile which accounts for approximately two-thirds of all applications (apps). CU cases.3,4 ICTs are being explored for medical purposes to The intensity of pruritus, recurrence of wheals improve clinical outcomes and enhance commu- and swellings, and unpredictable nature of CU can nications between healthcare providers (HCPs) all greatly impact patients' quality of life, affecting and patients. During the past 25 years, especially both physical and emotional health.5–8 The current the past 5 years,14 ICTs have become powerful first- and second-line therapies for CU, second- informational tools to provide health-related generation H1-antihistamines at licensed doses knowledge to HCPs and patients alike.14 and up dosed (up to 4x) second-generation H1- antihistamines,2 are insufficient to control the A previous study found e-mail and SMS (short disease in around half of CSU patients.4 This is messaging service) to be the most popular forms one of the reasons why adherence to medical of electronic communication for receiving and treatments is low in patients with CU, with one seeking information among patients with asthma. study reporting non-compliance with recom- WhatsApp was preferred among patients in the mended treatment regimens in the majority (72%) age category 12–40 years.15 of patients.9 Patients with CU have a high need for knowl- Patients living with chronic conditions are edge about their disease, to discover more about increasingly turning to self-management educa- its causes, course, possible trigger factors, avail- tion (SME) as a means of taking control of their able treatment options, and prognosis. This high health. Indeed, SME is recommended because it need is mirrored by the fact that CU patient- can help improve treatment outcomes and quality physician consultations are particularly long and of life, and it may reduce depression and anxiety frequent.16 It is thought that in addition to Volume 13, No. 11, Month 2020 3 consultations, ICTs are becoming increasingly completed the study-related questionnaire (see important to patients with CU, who use ICTs to Supplement 1) in the presence of trained medical interact with each other about their condition, to staff, who answered any queries if they arose. share coping experiences, to offer social support, For this purpose, a 23-item questionnaire was and to support communication with their developed and reviewed by an expert panel of physician. The current study aims to investigate physicians who evaluated potential items to be this further. included. The final survey contained a range of As of yet, it is not known which general or spe- questions about the use of ICTs; reported herein cific ICTs patients use to obtain information on are results on the type, frequency, preference, and health-related topics and specifically on CU, or patient-rated quality of ICTs, for obtaining infor- how patients perceive the currently available in- mation on health topics in general, and for getting formation via ICTs. Gaining knowledge on this is information specifically about CU. important to better inform CU patients about their The questionnaire assessed whether patients disease, to match the right informational content owned a cell phone, a smartphone, and had to the right ICTs, and to provide CU-specific ICT internet access. It evaluated the usage rate (daily, platforms if seen as necessary by patients. To this at least once a week, at least once a month, less end, an international study was set up in the than once a month, and never) of several ICTs, UCARE (Urticaria Centers of Reference and Excel- online communication tools, and social media lence) network17 to assess the frequency and platforms (WhatsApp, email, SMS, Skype, web preference of ICTs used by CU patients for browser, YouTube, blog or forum, Facebook, general health-related and CU-related informa- Instagram, Twitter, and LinkedIn). Additionally, the tion, and to assess the quality of information questionnaire quantified patients’ use of ICTs, and available via ICTs from the patients' perspective. rated the quality of general health-related and CU- related information patients obtained through METHODS various ICT platforms using the following scale: not interesting, a little interesting, moderately inter- Study design and setting esting, very interesting, and extremely interesting. In this anonymous, cross-sectional study, 1800 Furthermore, the questionnaire evaluated pa- patients were recruited from primary healthcare tient demographics, including the type of CU, age, centers, university hospitals or specialized clinics sex, duration of CU, area of residence, education (public or private), that are part of the UCARE level, and employment status. network. The following countries were involved: Germany, Greece, Spain, Poland, Turkey, Switzerland, the Netherlands, Denmark, India, Standardization of data Russia, Brazil, the United Arab Emirates (UAE), To help standardize the results, researchers Peru, Iran, Argentina, and China. trained interviewers and data collectors on the content of the survey and on how to answer pa- Patient population tients' questions before completion. Surveys Patients were included on a first-come basis, if collected at each center were recorded in a stan- they were over 12 years old and had physician- dardized database, which were then transferred to diagnosed CSU or CIndU. Patients were the leading center and consolidated in a single excluded if they had a diagnosis of any other central database for processing and statistical dermatological disorder (eg, contact dermatitis), analysis. Data security and protection was pre- had an intellectual disability, or refused to partici- served at all points during this process. pate in the study. Ethical considerations Data collection and measurements Before participating in the survey, patients were During or after a medical consultation, or during informed in detail about the purpose of the study their stay at a health center, each patient and all provided verbal informed consent. 4 Maurer et al. World Allergy Organization Journal (2020) 13:100475 http://doi.org/10.1016/j.waojou.2020.100475 This study was approved by the ethics committee such anonymity and personal data protection were Comité de ética e Investigación en Seres Humanos preserved. (HCK-CEISH-19-0059), Guayaquil, Ecuador, and by the ethics committees of the participating UCAREs, Statistical analysis as required. With the information recollected in the survey, personal identification was not possible; as A chi-squared test was employed to assess the association between patient demographics and N of patients (total n ¼ 1800) Type of chronic urticaria (%) - CSU 63.0 1134 - CIndU 18.2 328 - CSU þ CIndU 18.6 334 - No information 0.2 4 Mean ageSD (median) in years 40.7  14.9 (38) 1796 Sex distribution (female:male) (%) 69.8:30.2 1256:544 Mean duration of urticariaSD (median) in years 5.5  6.9 (3) 1799 Area of residence (%) - Rural 25.7 462 - Urban 74.3 1338 Education level (%) - No school education 0.7 12 - Primary/middle school 8.5 153 - Secondary/high school 32.4 583 - Undergraduate/College 34.6 622 - Postgraduate studies 23.7 427 - No information 0.2 3 Employment status (%) - Employed 50.1 901 - Self-employed 10.4 187 - Unemployed 4.7 85 - Retired 9.8 177 - Student 12.1 218 - Homemaker 11.4 206 - Disabled 1.4 26 Table 1. Population characteristics and demographics. CIndU, chronic inducible urticaria; CSU, chronic spontaneous urticaria; ICT, information and communications technology; n, number of patients; SD, standard deviation. Volume 13, No. 11, Month 2020 5 characteristics (independent variables) and (583/1,800, 32.4%) or undergraduate/college internet access or owning a cell phone or smart- level (622/1,800, 34.6%), and half (901/1,900, phone, and the frequency of use of each ICT type. 50.1%) were in employment. For data analysis, we categorized the ICTs post- Almost all CU patients have access to ICTs and use hoc into one of the following three categories: them regularly  One-to-one (dialogic): SMS, WhatsApp, Skype, ICT platforms were broadly used by all CU pa- and email tients: 99.6% of 1800 patients (yes n ¼ 1791; no  One-to-many (informative): YouTube, web n ¼ 8; missing n ¼ 1) had access to ICTs (as either a browsers, and blogs or forums cell phone [of any type and functionality], smart- phone, or internet access (via any means), 94.9%  Many-to-many (social): Instagram, Twitter, Face- (yes n ¼ 1709; no n ¼ 91) had a smartphone, and book, and LinkedIn 96.8% (yes n ¼ 1741; no n ¼ 58; missing n ¼ 1) had internet access. All data were analyzed using SPSS version 22.0 software (SPSS Inc., Chicago, IL, USA). A p-value of Daily, 85.4% of patients (yes n ¼ 1286; no less than 0.05 was considered significant for all n ¼ 220; missing n ¼ 294) used one-to-one ICT tests. In case of missing data, these data were not platforms most often, followed by one-to-many included in the calculation of proportions but the ICTs (75.5%; yes n ¼ 1172; no n ¼ 381; missing number of missing datasets is provided. n ¼ 247), and many-to-many ICTs (59.2%; yes n ¼ 967; no n ¼ 667; missing n ¼ 166; Fig. 1). The daily ICT usage was highest for web browsers RESULTS (72.7%) and WhatsApp (70.0%), followed by Population characteristics emails (54.1%), SMS (46.2%), Facebook (44.6%), YouTube (35.5%), and Instagram (33.7%; Fig. 2). Table 1 shows the overall population characteristics and demographics for this study. ICT usage differs depending on country, level of Patients covered a wide range of age groups and education and age included those with CSU (1134/1,800, 63.0%), CIndU (328/1,800, 18.2%), and CSU þ CIndU There were no major differences concerning (334/1,800, 18.6%). For questionnaire sex; one-to-one ICTs were used by 92.3% (yes contributions by country, see Supplement 2. Most n ¼ 431; no n ¼ 36; missing n ¼ 77) of males and patients were educated to secondary/high school 92.8% (yes n ¼ 964; no n ¼ 75; missing n ¼ 217) of 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. 6 Maurer et al. World Allergy Organization Journal (2020) 13:100475 http://doi.org/10.1016/j.waojou.2020.100475 females every day or at least weekly. Similarly, we and Greece, and comparably strong in India, saw no differences with the residential area; one- Turkey, the UAE, Peru, and the Netherlands. ICTs to-one ICTs were used by 95.3% (yes n ¼ 381; no in the many-to-many category were used particu- n ¼ 19; missing n ¼ 62) of patients living in rural larly infrequently in Iran and often used in India, areas and 91.7% (yes n ¼ 1014; no n ¼ 92; missing Denmark, Turkey, the UAE, and Peru. n ¼ 232) of patients living in urban areas every day or at least weekly. The use of ICTs did not appear The general usage of ICT platforms increased in to change with the duration of disease, but pa- patients with higher levels of education, which was tients who had experienced CU for 1–2 years used true across all three ICT categories; one-to-one ICT ICTs slightly more often to obtain general health platforms were used every day or at least once a and CU-related information than those patients week in patients with no schooling (63.6%; yes with a longer disease duration. n ¼ 7; no n ¼ 4; missing n ¼ 1), middle/primary school (74.0%; yes n ¼ 94; no n ¼ 33; missing Considerable differences exist between coun- n ¼ 26), secondary/high school (92.6%; yes tries; general ICT usage was weak in Iran, China, n ¼ 438; no n ¼ 35; missing n ¼ 110), Pa ent WhatsApp Email SMS Skype Web YouTube Blog or Facebook Instagram Twi er Linked Other numbers browser forum In Daily 1,228 922 768 52 1,273 588 49 776 590 139 67 206 users ≥1 per 106 287 263 100 214 442 114 173 152 62 89 27 week users Daily or 1,334 1,209 1,031 152 1,487 1,030 163 949 742 201 156 233 ≥1 per week users Missing 45 95 136 88 48 145 87 61 51 48 62 706 CU, chronic ur carial; ICT, informa on and communica ons technology; SMS, short messaging service 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. Volume 13, No. 11, Month 2020 7 undergraduate/college (96.6%; yes n ¼ 511; no used YouTube and 13.6% (yes n ¼ 244; no n ¼ 18; missing n ¼ 93), and postgraduate studies n ¼ 1547; missing n ¼ 9) used Facebook. One in (94.2%; yes n ¼ 342; no n ¼ 21; missing n ¼ 64). 5 (21.6%; no n ¼ 385; missing n ¼ 14) patients One-to-one ICTs were used by large proportions did not use any form of ICT for obtaining of all age groups, while one-to-many ICTs and, information on CU. particularly many-to-many ICTs, were less often There were no major sex differences concerning used by patients 40 years and older, with further the use of ICT platforms to obtain general health or decreasing frequency in older age groups. CU-related information. Patients with a higher level of education used ICTs more often to obtain in- One-to-many ICTs are most commonly used by formation on general health or CU, thus mirroring CU patients to obtain general health and CU- the use of ICTs for any purpose. related information Usage of ICTs for general health information One-to-many was the preferred ICT category for was similar for various age ranges of adult patients, obtaining general health information, used by but ICTs were used less frequently by retired pa- 78.9% of patients (yes n ¼ 1410; no n ¼ 377; tients >60 years and younger patients <20 years missing n ¼ 13) and for obtaining CU-related in- (Table 2). One-to-many ICTs and, particularly formation (used by 75.9% of patients; yes many-to-many ICTs, were less often used by pa- n ¼ 1357; no n ¼ 431; missing n ¼ 12). Web tients 40 years or older. browsers (77.6%; yes n ¼ 1391; no n ¼ 401; missing n ¼ 8) were by far the most commonly Patients living in rural areas tended to use ICT used ICTs to obtain general health information, platforms slightly more often than those living in followed by YouTube (25.8%; yes n ¼ 461; no urban areas. This was particularly so for the many- n ¼ 1329; missing n ¼ 10) and Facebook (16.3%; to-many ICTs, to obtain general health information yes n ¼ 292; no n ¼ 1499; missing n ¼ 9; Fig. 3); (27.9% vs. 17.8%), and especially for information 18.6% of patients (no n ¼ 331; missing n ¼ 17) on CU (26.2% vs. 13.8%; Table 2). did not use an ICT platform for this purpose. Similarly, when obtaining information specifically Patients rate one-to-many ICTs as the most on CU, 3 out of 4 patients (74.6%; yes n ¼ 1336; interesting for obtaining health information no n ¼ 456; missing n ¼ 8) used a web browser, The quality of the information obtained from 20.9% (yes n ¼ 374; no n ¼ 1417; missing n ¼ 9) one-to-many ICTs was rated much more often as 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. 8 Maurer et al. World Allergy Organization Journal (2020) 13:100475 http://doi.org/10.1016/j.waojou.2020.100475 General health information Chronic urticaria-related information One-to One-to Many-to- One-to Many-to- One-to-many -one -many many -one many Sex: %, yes n/total patient n, (no n, missing n) Male 32.8% 76.4% 17.3% 23.6% 74.6% 12.7% 178/542 414/542 94/543 128/542 405/543 69/543 (364, 2) (128, 2) (449, 1) (414, 2) (138, 1) (474, 1) Female 25.6% 80.0% 21.7% 21.0% 76.5% 18.8% 319/1246 996/1245 271/1247 262/1247 952/1245 235/1247 (927, 10) (249, 11) (976, 9) (985, 9) (293, 11) (1,012, 9) Age group: %, yes n/total patient n, (no n, missing n) <20 years 22.3% 72.3% 21.3% 18.1% 67.0% 18.1% 21/94 68/94 20/94 17/94 63/94 17/94 (73, 2) (26, 2) (74, 2) (77, 2) (31, 2) (77, 2) 20–29 33.1% 87.4% 23.7% 22.8% 84.2% 17.3% years 113/341 298/341 81/342 78/342 288/342 59/342 (228, 3) (43, 3) (261, 2) (264, 2) (54, 2) (283, 2) 30–39 32.5% 89.0% 24.7% 24.4% 86.8% 20.2% years 166/510 453/509 126/510 124/509 441/508 103/510 (344, 4) (56, 5) (384, 4) (385, 5) (67, 6) (407, 4) 40–49 29.6% 83.0% 21.6% 25.9% 81.6% 22.1% years 103/348 288/347 75/348 90/348 284/348 77/348 (245, 0) (59, 1) (273, 0) (258, 0) (64, 0) (271, 0) 50–59 24.1% 70.7% 16.2% 19.2% 64.3% 12.8% years 64/266 188/266 43/266 51/266 171/266 34/266 (202, 0) (78, 0) (223, 0) (215, 0) (95, 0) (232, 0) >60 years 12.9% 50.0% 8.4% 12.4% 47.8% 5.8% 29/225 113/226 19/226 28/226 108/226 13/226 (196, 3) (113, 2) (207, 2) (198, 2) (118, 2) (213, 2) Disease duration: %, yes n/total patient n, (no n, missing n) 1 year 30.0% 79.0% 21.9% 21.9% 76.3% 15.8% 118/393 309/391 86/393 86/393 299/392 62/393 (275, 1) (82, 3) (307, 1) (307, 1) (93, 2) (331, 1) >1-2 33.8% 86.5% 25.4% 26.0% 85.3% 23.2% years 110/325 283/327 83/327 85/327 279/327 76/327 (215, 3) (44, 1) (244, 1) (242, 1) (48, 1) (251, 1) >2-5 28.1% 79.9% 17.7% 23.2% 75.7% 14.4% years 151/537 429/537 95/536 124/535 406/536 77/536 (386,3) (108, 3) (441, 4) (411, 5) (130, 4) (459, 4) >5 years 22.2% 73.3% 18.9% 17.8% 70.1% 16.7% 118/532 389/531 101/533 95/533 373/532 89/533 (414, 5) (142, 6) (432, 4) (438, 4) (159, 5) (444, 4) Living area: %, yes n/total patient n, (no n, missing n) Rural (continued) Volume 13, No. 11, Month 2020 9 General health information Chronic urticaria-related information One-to One-to Many-to- One-to Many-to- One-to-many -one -many many -one many 28.4% 82.3% 27.9% 24.9% 78.8% 26.2% 130/457 376/457 128/458 114/458 361/458 120/458 (327, 5) (81, 5) (330, 4) (344, 4) (97, 4) (338, 4) Urban 27.6% 77.7% 17.8% 20.7% 74.9% 13.8% 367/1331 1034/1330 237/1332 276/1331 996/1330 184/1332 (964, 7) (296, 8) (1,095, 6) (1,055, 7) (334, 8) (1,148, 6) Table 2. ICT usage by category for general health information and chronic urticaria-related information. Missing information is not included in the computation of proportions. ICT, information and communications technology; n, number of patients. 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. 10 Maurer et al. World Allergy Organization Journal (2020) 13:100475 http://doi.org/10.1016/j.waojou.2020.100475 very interesting/of good quality to extremely hypertension, also in Ecuador, showed internet interesting/of very good quality for general health access to be around 80%,19 indicating information (53.5%; yes n ¼ 268; no n ¼ 233; inconsistency across various medical conditions. missing n ¼ 1299) and CU-related information (51.5%; yes n ¼ 257; no n ¼ 242; missing n ¼ 1301) Patients use ICTs regularly for any purpose as compared to the one-to-one and many-to-many categories (Fig. 4A). Fig. 4B shows the patient- Daily, patients used one-to-one (SMS, What- rated quality of information by specific ICT plat- sApp, Skype, and email) ICTs most often, followed form, which indicates that web browsers were by one-to-many (YouTube, web browsers, and rated most often as very or extremely interesting, blogs or forums), and many-to-many (Instagram, or of good or very good quality. However, full in- Twitter, Facebook, and LinkedIn) ICT platforms. formation on the quality of information was avail- The highest usage for specific ICT platforms were able for only around 500 patients. web browsers (72.7%) and WhatsApp (70.0%); this indicates that in addition to the one-to-many ICT web browsers, patients also display a high de- DISCUSSION mand to communicate and acquire information Top-line results through personalized one-to-one means. It should be noted, however, that some patients may have This study is the first to demonstrate the ICT answered yes for the use of web browsers, You- usage habits of patients with CU; results indicate Tube, and blogs/forums ICTs, as YouTube and that almost all (99.6%) patients had access to ICT blogs/forums require a web browser for access. platforms. To obtain general health and CU-related information, the one-to-many category was preferred, with web browsers being the over- ICT usage differs depending on country, age and whelming favorite, used by three out of four pa- level of education tients. The next most commonly used, YouTube, We observed considerable differences in ICT was used only by around one in four patients. usage between countries; general ICT usage was weak in Iran, China, and Greece, and comparably The population of this study strong in India, Turkey, the UAE, Peru, and the In total, 63.0% of patients included in this study Netherlands. ICTs in the many-to-many category had CSU, reiterating current estimates that CSU were used particularly infrequently in Iran and accounts for around two-thirds of all CU cases.4 often used in India, Denmark, Turkey, the UAE, and We predicted that certain independent variables Peru. Low use in Iran and China may be explained such as age and employment status had the by the fact that many-to-many ICTs are highly potential to influence the use of ICTs; thus, to try regulated or difficult to access in these countries, to account for this we recruited a heterogeneous especially social media platforms like Facebook patient population that covered a range of ages, and Twitter. However, we saw an unexpectedly and we stratified results by patient characteristics. high use of ICTs in the UAE, which also has high levels of censoring. The reasons behind this would Almost all CU patients have access to ICTs be worth exploring in more detail to assess how this could affect optimal use; lower ICT usage in Interestingly, only 0.4% of patients in this study censored countries may have implications on did not have access to ICTs via cell phone, smart- development strategies for any new ICT. phone, or internet access. This is surprising because we included a wide cross-section of Data have suggested that the use of ICTs cor- countries; the results indicate that the inclusion of relates with an individual's level of education; lower-income countries did not appear to affect higher levels of education are associated with the accessibility to the internet. A previous report increased ICT use or increased interest in using of ICT use in cancer patients in Ecuador found that ICTs for health purposes.20 As expected, we found only 43% of participants surveyed had internet that more educated patients used ICTs frequently access,18 less than half of what we report here. to acquire information on general health or CU. However, another report in patients with Nevertheless, ICTs were used by over 63% of Volume 13, No. 11, Month 2020 11 patients with no schooling, indicating widespread the quality of YouTube videos was a poor use regardless of the level of education. predictor of viewer engagement. Individuals watched videos containing misleading or false One-to-many ICTs are most commonly used by information significantly more often compared to CU patients to obtain general health and CU- videos containing accurate information on related information hypertension.21 If HCPs advocate the use of a particular ICT to patients, they must have a One-to-many was the preferred ICT category for responsibility to ensure high-quality and accurate obtaining general health and CU-related informa- information.22 tion. This usage differs slightly from the ICT usage for any purpose, in that the frequency of What- Notably, the use of ICTs for obtaining health sApp use was substantially lower for health pur- information was significantly reduced in older, poses. Patients used all the one-to-many platforms retired patients. This low usage could be due to included in this study, plus Facebook, most often many factors concerning older generations, for acquiring health information, with relatively low including age-related cognitive decline, negative usage of the other ICTs; this indicates that the one- attitudes towards technologies, perceived lack of to-many category is a clear favorite for CU patients, usefulness,23 or simply no inclination to learn with a broad range of individuals being reached about new technologies; many older patients through these means. prefer to speak to their doctor or friends face-to- face. Mirroring the general ICT usage, web browsers were without doubt the most commonly used ICTs The higher use of ICTs by patients living in rural for health and CU information, used by more than areas vs. urban areas indicates that access to 3 out of 4 patients. The high use of web browsers specialists is more limited in rural areas. It indicates also aligns with findings from other medical con- that approaches to improving patient care through ditions, such as cancer.18 These results point to a the use of ICTs may be especially helpful in potential question around patients’ perceptions countries or regions with a high rate of people and of credibility; patients are more likely to trust a patients living in rural areas. Moreover, patients named, accredited medical organization, such as who live in rural areas may have different needs the National Institute for Health and Care and expectations when it comes to ICTs. This Excellence when seeking knowledge about their should be explored further and specific strategies condition. They would likely have less confidence need to be developed to improve care in this pa- in reports, advertisements, and sponsored tient population, based on the results of future content on Instagram or Twitter because studies. misinformation can quickly disseminate between individuals sharing posts, and the true source is Patients rate one-to-many ICTs as the most often unidentified. It would be interesting to interesting for obtaining health information investigate further which websites patients use most often to seek CU information as the current More than half of patients questioned about the information offers little insight into the most quality of information obtained from ICTs rated the highly used websites. one-to-many category as very to extremely inter- esting/of good or very good quality for health and Our results indicate that YouTube was the next CU-related information as compared to the other most commonly used platform; however, usage categories. Again, this reflects the higher use of dropped significantly to only 1 out of every 4 pa- platforms in the one-to-many category, and it fol- tients. YouTube could represent a feasible means lows that patients use the platforms in which they for educating patients on CU. However, many have the most interest. It does not necessarily point videos are misleading, poor-quality, and uploaded to the quality of information, but rather, what pa- by individuals with unknown credentials, with tients find most compelling to read. As indicated some even promoting unproven alternative treat- with YouTube, individuals’ viewings are higher for ments.21 Concerningly, one study investigating counterfeit channels rather than legitimate videos ICTs use in patients with hypertension found that reporting reliable information.21 12 Maurer et al. World Allergy Organization Journal (2020) 13:100475 http://doi.org/10.1016/j.waojou.2020.100475 The use of ICTs has several potential advan- Ethics statement tages, including educating patients and HCPs, The authors declare that this manuscript complies with the improving quality of care and exchange of infor- ethics in publishing guidelines. mation, and promoting patient-centered health- care.13,24 Here, for the first time, we show that Author contributions almost all CU patients have access to ICTs and The authors declare that they have made substantial most use them regularly for health and CU- contributions to the conception and design of the study, related information, unlocking new opportunities acquisition of data, or analysis and interpretation of data, of drafting the article or revising it critically for important for bidirectional patient-physician intellectual content, and all authors have provided communications. approval of the final version submitted. Study limitations Funding statement This study is limited by the risk of selection bias This study was performed with intramural funding and financial support from the WAO. in the recruitment process, with the most serious patients who regularly visit their HCP participating. Patients included knew the purpose of this study, Availability of data and materials which may have influenced their answers. Also, the All study materials and data were available to all study centers and physicians. accessibility of ICTs differs between countries, which would have directly affected the results. Declaration of competing interest Another limitation is that the sample sizes in some M Maurer is or recently was a speaker and/or advisor for, and/or has received research funding from: Allakos, countries were small. Finally, a proportion of the Alnylam, Aralez, AstraZeneca, Biocryst, Blueprint, CSL survey data was missing because not all patients Behring, FAES, Genentech, Kalvista Pharmaceuticals, LEO completed the questionnaires, leading to potential Pharma, Menarini, Moxie, MSD, Novartis, Pharming, differences between responders and non- Pharvaris, Roche, Sanofi, Shire/Takeda, UCB, and Uriach. K responders, for which we may have not fully Weller is or recently was a speaker and/or advisor for, and/ accounted. 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 CONCLUSIONS Biocryst, CSL Behring, Kalvista Pharmaceuticals, Moxie, Novartis, Pharming, and Shire/Takeda. RR Maurer has no The results of this study show conclusively that conflicts of interest. E Vanegas has no conflicts of interest. CU patients use ICTs to acquire information about M Felix has no conflicts of interest. A Cherrez has no their condition and that their preferred platform is conflicts of interest. VL Mata has no conflicts of interest. A a web browser. These results may help support the Kasperska-Zajac has no conflicts of interest. A Sikora has no development of a CU-specific ICT, which could conflicts of interest. D Fomina is or recently was a speaker provide patients with optimized, tailored disease and/or advisor for, and/or has received research funding from: AstraZeneca, CSL Behring, Glaxo SmithKline, MSD, management, and ultimately improve patient out- Novartis, Sanofi, and Shire/Takeda. E Kovalkova has no comes. Based on our results, we recommend that conflicts of interest. K Godse has no conflicts of interest. N future efforts on improving patient education and Dheeraj Rao has no conflicts of interest. M Khoshkhui has information on CU should prioritize the one-to- no conflicts of interest. S Rastgoo has no conflicts of in- many category, with particular focus on websites terest. RFJ Criado has no conflicts of interest. M Abuzakouk has no conflicts of interest. D Grandon has no conflicts of and YouTube videos from accredited urticaria ex- interest. M van Doorn is or recently was a speaker and/or perts and centers such as those in the UCARE advisor for, and/or has received research funding from network. Abbvie, BMS, Celgene, Janssen Cilag, LEO Pharma, Lilly, MSD, Novartis, Pfizer, and Sanofi-Genzyme. S Valle has no Abbreviations conflicts of interest. E Magalhães de Souza Lima has no Apps: applications; CIndU: chronic inducible urticaria; conflicts of interest. SF Thomsen is or recently was a CSU: chronic spontaneous urticaria; CU: chronic urticaria; speaker and/or advisor for, and/or has received research HCP: healthcare provider; ICT: information and communi- funding from: Abbvie, AstraZeneca, Celgene, Eli Lilly, cations technologies; SEM: self-management education; Janssen, LEO Pharma, Novartis, Pierre Fabre, Roche, SMS: short messaging service; UAE: United Arab Emirates; Sanofi, and UCB. GD Ramón has no conflicts of interest. EE UCARE: Urticaria Centers of Reference and Excellence Matos Benavides has no conflicts of interest. A Bauer has Volume 13, No. 11, Month 2020 13 no conflicts of interest. Ana M Giménez-Arnau has held Janeiro, Brazil. oFaculty of Science and Health of Juiz de roles as a Medical Advisor for Sanofi and Uriach, and has Fora - SUPREMA - Minas Gerais. pDepartment of research grants supported by Instituto Carlos III- FEDER, Dermatology, Bispebjerg Hospital, University of Novartis, and Uriach; she also participates in educational Copenhagen, Biomedical Sciences, Copenhagen, activities for Almirall, Genentech, Glaxo SmithKline, LEO Denmark. qInstituto de Alergia e Inmunología del Sur, Pharma, Menarini, MSD, Novartis, Sanofi, and Uriach. E Bahía Blanca, De Buenos Aires, Argentina. rCentro de Kocatürk is or recently was a speaker and/or advisor for Referencia de Alergia, Asma e Inmunología - Instituto Bayer, Novartis, and Sanofi. C Guillet has no conflicts of Nacional del Niño, Lima-Perú. sDepartment of interest. JI Larco is or recently was a speaker and/or advisor Dermatology, University Allergy Center, University Hospital for: FAES, Novartis, and Sanofi. Z-T Zhao has no conflicts of Carl Gustav Carus, Technical University, Dresden, interest. M Makris is or recently was a speaker and/or Germany. tDepartment of Dermatology, Hospital del Mar, advisor for, and/or has received research funding from IMIM, Universitat Autònoma, Barcelona, Spain. u AstraZeneca, Chiesi, Glaxo SmithKline, Novartis, and Department of Dermatology, Koç University School of Sanofi. C Ritchie has no conflicts of interest. P Xepapadak Medicine, Istanbul, Turkey. vDepartment of Dermatology, reports personal fees from Galenica Greece, Glaxo University Hospital Zurich, Switzerland. wAllergy SmithKline, Nestle, Novartis, Nutricia, and Uriach, outside Department, Clinica San Felipe, Lima, Peru. xDepartment of the submitted work. LF Ensina is or recently was a speaker Dermatology and Venereology, Peking University First and/or advisor for, and/or has received research funding Hospital, Beijing, China. yAllergy Unit, 2nd Department of from Novartis, Sanofi, and Takeda. S Cherrez has no con- Dermatology and Venereology, National and Kapodistrian flicts of interest. I Cherrez-Ojeda has no conflicts of interest. University of Athens, “Attikon” University Hospital, Greece. z Allergy Division, Hospital Italiano de Buenos Aires, Buenos Acknowledgements Aires, Argentina. aaAllergy Department, 2nd Pediatric We wish to thank Gillian Brodie of Orbit Medical Clinic, National and Kapodistrian University of Athens, Communications Ltd. for editorial assistance, and the Greece. abFederal University of São Paulo, São Paulo, Universidad Espiritu Santo. This project benefitted from the Brazil. acDepartment of Dermatology, SRH Zentralklinikum support of the GA2LEN network of urticaria centers of Suhl, Germany. reference and excellence (UCARE, www.ga2len-ucare.com) and the World Allergy Organization (WAO). REFERENCES Appendix A Supplementary data 1. Maurer M, Rosen K, Hsieh HJ, et al. 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