Razi Journal of Medical Sciences

fa ارائه برنامه کاربردی خود مراقبتی مبتنی بر تلفن همراه برای بیماران مبتلا به شکاف کام و لب Development of a mobile application for self-care of patients with cleft lip and palate گوش و حلق و بینی ENT پژوهشي Research زمینه و هدف: بیماری شکاف کام و لب یکی از نقایص شایع مادرزادی است که ناشی از اختلال در فرایند رشد صورت در ابتدای دوران جنینی میباشد. به دلیل طبیعت پیچیده این بیماری هدف اصلی این پژوهش ارائه برنامه کاربردی خود مراقبتی مبتنی بر تلفن همراه برای بیماران مبتلا به شکاف کام و لب بود تا گامی در جهت افزایش آگاهی والدین بیماران و کاهش مراجعات غیرضروری آنها به مراکز درمانی برداشته شود. روش کار: پژوهش حاضر از نوع توسعهای-کاربردی بود. ابتدا جهت تعیین محتوای آموزشی، پرسشنامهای تهیه شد و به 20 نفر از پزشکان متخصص گوش و حلق و بینی، جراحی فک و صورت، جراحی پلاستیک، و متخصصین گفتار درمانی شاغل در بیمارستانهای حضرت رسول (ص)، حضرت علی اصغر (ع)، و امام خمینی (ره) ارائه گردید. بر اساس نتایج، نمونه اولیه برنامه کاربردی با زبان برنامه نویسی کاتلین در محیط اندروید استودیو طراحی شد. سپس نمونه اولیه برای والدین 30  نفر از بیماران مبتلا به شکاف کام و لب مراجعه کننده به بیمارستان حضرت علی اصغر (ع) ارسال شد و به مدت یک هفته مورد استفاده قرار گرفت. در نهایت جهت ارزیابی قابلیت استفاده و میزان رضایت کاربران پرسشنامه کوییز در اختیار آنها قرار گرفت. یافته ها: بر اساس نتایج آماری حاصل از پرسشنامه، پزشکان تمام اقلام اطلاعاتی را ضروری دانستند. این اقلام شامل سه عنوان اصلی انواع شکاف های دهانی، مدیریت بیماری در مراحل مختلف سنی و راهنمای والدین بود. نتایج حاصل از تحلیل آماری پرسشنامه ارزیابی قابلیت استفاده نشان داد که کاربران نرمافزار را درسطح خوب ارزیابی کردند. نتیجه گیری: یکی از بهترین ابزارهای ارتقا سطح آگاهی و بهبود خود مراقبتی افراد، نرمافزارهای مبتنی بر تلفن همراه است. همچنین برای ارتقاء سطح دانش والدین کودکان مبتلا به شکاف کام و لب در زمینه مراقبت از فرزند خود و کاهش اضطراب آنها، استفاده از نرم افزار خودمراقبتی مبتنی بر گوشیهای هوشمند میتواند گزینه مناسبی باشد. Background & Aims: Cleft lip and palate is a common birth defect that is caused by abnormal facial growth in early embryonic stage. The disease complex causes are associated with various environmental and genetic factors (1, 2). The prevalence of cleft lip with or without cleft palate is one in 700 live births, annually (5). In Iran the prevalence of orofacial clefts is 1.4 per 1000 live births (6). Children with cleft lip and palate may have a variety of impairments including dental problems, persistent otitis media, nutritional problems, and learning, speech, and language disorders (9, 10). Due to the complex nature of facial clefts and the numerous medical problems that patients are involved with, treatment management is required with a team consisting of several specialties (11, 12). This multidisciplinary team usually includes: speech therapists and audiologists, clinical nurse specialists, orthodontists, ENT specialists, clinical, genetic and psychological counsellors. Initial treatment starts prenatally or shortly after birth and may continue into early adulthood (12, 13). Helping parents of newborns with cleft lip and palate in terms of feeding methods plays a significant role in proper weight gain. (3) In addition, in the age of preschool, improving oral health behavior can lead to plaque control in children with cleft lip and palate (15). Information which people obtain through information technologies affects their health-related behaviors and decisions in 33 to 48% of cases (18). Health information technology may provide unique opportunity to improve self-care behaviors, so patients can easily exchange information with healthcare providers and access their necessary information in a timely manner (20). Çınar et al reported that parents of children with cleft lip and palate tended to seek information about cleft lip and/or palate disease on virtual networks such as Facebook (21). Hemati et al showed that happiness-training program had a positive effect on improving mothers' performance in caring of their children with cleft lip and palate (30).  The main purpose of this study was to develop a mobile application for self-care of patients with cleft lip and palate in order to increase the awareness of parents and patients and reduce their unnecessary visits to medical centers. Methods: This research was a developmental-applied study, consisted of two stages: the first was to determine educational content requirement, and second a mobile based self-care application was developed and evaluated. The sample in first stage comprised 20 specialists in Otorhinolaryngology, maxillofacial and Plastic surgery, and Speech therapy who were employed in the hospitals of Hazrat Rasool, Ali Asghar, and Imam Khomeini. Data collection has been done using a questionnaire developed to determine the educational content. Two answers were considered for each question: necessary and unnecessary to identify the necessity of software options from specialists’ point of view. Each option that received positive feedback more than 60 percent was included in the application. At the second stage, based on the results obtained from first stage, an application was designed using Kotlin programming language in Android environment. The prototype was then sent to 30 patients with cleft lip and palate or their parents to use it for at least one week. Finally, the standard Questionnaire for User Interface Satisfaction (QUIS) version 5.5 was used to evaluate user satisfaction and application usability. This 10-choice Likert scale questionnaire with a score of zero to nine consists of six sections including: user's personal information, overall reaction to the software, screen, terminology and system information, learning, and system capabilities. Data analysis was performed using Statistical Package for the Social Sciences (SPSS) software. The scores of each part of the questionnaire were classified into three levels as "not good" (0-3), " medium" (3.1-6) and "good" (6.1-9). Results: Based on results (descriptive statistics) of the first stage of this study, physicians considered all items as necessary with the average score more than 60 percent. These items have three main topics including: different types of cleft lip and palate, disease management at different ages, and parent guide. Each of which includes sub-categories that are all listed in the software. After developing of application, we sent to 30 parents of children with cleft lip and palate who had smartphone through WhatsApp. User must register and enter his/her personal and clinical data first. After one week, an electronic questionnaire link has been sent for users that patients or their parents could fill and submit their comments. The results of usability evaluation questionnaire showed that users evaluated the software at "good" level. Conclusion: One of the best tools to raise awareness and improve people's self-care skills are mobile-based applications. Studies showed that mobile health could be an effective way to facilitate disease management, treatment follow up, access to information anywhere and anytime, and lower excess health care costs (20). Nabovati et al. reported that using mobile based applications had a positive effect on the health outcomes of patients with asthma. They concluded that all applications included in their study, recorded user data and half of them were educational with reminder (28). In our study, according to participants’ answer, we found out that this self-care application has a positive effect on patients with cleft lip and palate. So, such application could be a practical and satisfying option in order to improve the knowledge level of parents having children with cleft lip and palate, in terms of caring of their children and reduce their anxiety. شکاف کام و لب, گوشی های هوشمند, برنامه کاربردی, آموزش, خودمراقبتی Cleft lip and palate, Smart phone, Mobile application, Education, Self-care 54 63 http://rjms.iums.ac.ir/browse.php?a_code=A-10-5792-1&slc_lang=fa&sid=1 Mostafa Langarizadeh مصطفی لنگری زاده langarizadeh2001@yahoo.com 3900319475328460061853 3900319475328460061853 No Iran University of Medical Sciences, Tehran, Iran دانشگاه علوم پزشکی ایران، تهران، ایران Minoo Khalili مینو خلیلی khmn.92@gmail.com 3900319475328460061854 3900319475328460061854 Yes Iran University of Medical Sciences دانشگاه علوم پزشکی ایران، تهران، ایران Gholamreza Bayazian غلامرضا بیاضیان gr_bayazian@yahoo.com 3900319475328460061855 3900319475328460061855 No Iran University of Medical Sciences دانشگاه علوم پزشکی ایران، تهران، ایران