Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón, Madrid, Spain.
Department of Pharmacy, Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón, Madrid, Spain.
J Med Internet Res. 2022 Sep 13;24(9):e37445. doi: 10.2196/37445.
Information and communication technologies (ICTs) are changing the traditional health care model and redefining personalized health. ICTs offer effective communication and real-time monitoring of patients and provide additional data to support clinical decision-making, improve the quality of care, and contribute to the empowerment of patients. However, evidence on the use of ICTs and digital preferences of immune-mediated inflammatory disease (IMID) patients is scarce.
The aim of this study is to describe the degree of use of ICTs in patients with IMIDs (including rheumatic diseases, inflammatory bowel diseases, and psoriasis), identify their needs, and analyze their interest in the use of apps as tools for better management of their disease.
A questionnaire was created by a multidisciplinary team including pharmacists, rheumatologists, gastroenterologists, dermatologists, and nurses with experience in ICTs applied to the field of IMID. The survey included 27 questions organized into 3 blocks: (1) sociodemographic characteristics, (2) ICT use for health-related information, and (3) patient expectations about mobile health.
A total of 472 questionnaires were analyzed. Overall, 52.9% (250/472) of patients were diagnosed with a rheumatologic disease, 39.4% (186/472) with inflammatory bowel disease, and 12.3% (58/472) with psoriasis. The state of health was considered good by 45.6% (215/472) of patients. Patients were interested in staying informed about health issues in 86.9% (410/427) of cases and sought health-related information mainly from the internet (334/472, 70.8%) and health care professionals (318/472, 67.4%). Overall, 13.6% (64/472) did not trust the health information they found in internet. Of the patients, 42.8% (202/472) had a health app, and 42.2% (199/472) had found it on their own. Patients would like a health app to help mainly to manage appointments (281/472, 59.5%), obtain information about their diseases and treatments (274/472, 58.1%), and get in contact with health professionals (250/472, 53.0%). Overall, 90.0% (425/472) of patients reported they would use an app to manage their IMID if their health professional recommended it, and 58.0% (274/472) would pay or probably be willing to pay for it.
IMID patients were very interested in finding health-related information via ICTs, especially using smartphones and apps recommended by health professionals. Appointment management, advice on disease and treatment management, and personalized communication with health professionals were the most desired app features identified. Health professionals should play an essential role in recommending and validating these tools to ensure they are of high quality.
信息和通信技术（ICTs）正在改变传统的医疗模式，并重新定义个性化健康。ICTs 提供了对患者的有效沟通和实时监测，并提供了额外的数据支持临床决策，提高了护理质量，并有助于增强患者的能力。然而，关于 ICTs 的使用证据和免疫介导的炎症性疾病（IMID）患者的数字偏好证据很少。
本研究旨在描述 IMID 患者（包括风湿性疾病、炎症性肠病和银屑病）对 ICTs 的使用程度，确定他们的需求，并分析他们对使用应用程序作为更好地管理疾病的工具的兴趣。
一个由药剂师、风湿病学家、胃肠病学家、皮肤科医生和有 ICTs 应用于 IMID 领域经验的护士组成的多学科团队创建了一份问卷。该调查包括 27 个问题，分为 3 个部分：（1）社会人口统计学特征，（2）与健康相关的信息使用 ICTs，（3）患者对移动健康的期望。
共分析了 472 份问卷。总体而言，52.9%（250/472）的患者被诊断为风湿性疾病，39.4%（186/472）为炎症性肠病，12.3%（58/472）为银屑病。45.6%（215/472）的患者认为自己的健康状况良好。86.9%（410/427）的患者有兴趣了解健康问题，主要从互联网（334/472，70.8%）和医疗保健专业人员（318/472，67.4%）获取健康相关信息。总体而言，13.6%（64/472）的患者不信任他们在互联网上找到的健康信息。在这些患者中，42.8%（202/472）有健康应用程序，42.2%（199/472）是自行找到的。患者希望健康应用程序主要帮助管理预约（281/472，59.5%）、获取有关疾病和治疗的信息（274/472，58.1%）以及与医疗保健专业人员取得联系（250/472，53.0%）。总体而言，如果他们的医疗保健专业人员推荐，90.0%（425/472）的患者表示他们将使用应用程序来管理他们的 IMID，58.0%（274/472）的患者将付费或可能愿意付费。
IMID 患者对通过 ICTs 查找健康相关信息非常感兴趣，尤其是使用智能手机和医疗保健专业人员推荐的应用程序。预约管理、疾病和治疗管理建议以及与医疗保健专业人员的个性化沟通是确定的最需要的应用程序功能。医疗保健专业人员应在推荐和验证这些工具方面发挥重要作用，以确保其质量高。
