How Mobile Health Technology Can Help with Health Care of the Congenital Insensitivity to Pain with Anhidrosis (CIPA)?

Abstract

Congenital insensitivity to pain with anhidrosis (CIPA) is a rare genetic disease that is inherited as an autosomal recessive, and its cause is a genomic defect in tyrosine kinase; this disorder is mainly characterized by a lack of pain sensation, inability to sweat, and mental retardation.1 The probability of being born with this disease is about 1 in 125 million .2 The US National Institutes of Health puts the number of people with the disease at less than 5,000 in the United States. This institute has stated that about half of people with CIPA show signs of hyperactivity or emotional instability, and many people suffer from intellectual disabilities.2 Also, these patients are prone to multiple and frequent injuries, bruises, cuts, burns, bone fractures, and dislocations. In therapeutic and clinical conditions, to help the patient return to health faster, special exercises are designed and implemented with the opinion of experts.3 Performing these exercises is often associated with difficulties due to the patient's condition. To reduce these difficulties, virtual reality can be used in the rehabilitation of these patients. Virtual reality technology and video games can play a role in motivating and effective health care by creating simulated, motivating, interactive, and realistic environments. To date, the major applications of these technologies include medical simulation, telemedicine, medical education and health services, pain control, visualization for surgery, rehabilitation, and treatment of fear and trauma.4Since there is no treatment method for this disorder, encouraging patients to follow treatment instructions, raising awareness of health issues, monitoring and training patients for self-care in a remote manner, training people around and other caregivers, and continuous follow-up of their condition by nurses and other members of the health team can play an important role in reducing mortality in these people .5 In this field, health information technology can play an important and effective role. In recent years, mobile health technology has revolutionized the traditional way of providing health services by using wireless technologies such as Bluetooth, WiMAX, and Wi-Fi and sending text messages, data transfer, and access to various electronic health services. This has made it easier and provided a great opportunity for developing countries by saving scarce resources and telemedicine education, as well as health systems.5 Also, mobile applications have made it possible to record, transmit, and receive feedback anytime and anywhere, which facilitates remote monitoring and timely recommendations for healthcare. Mobile applications can also enhance self-care.6 Accordingly, considering the type of CIPA disease and the lack of suitable treatment for it, it seems that the use of mobile health technologies can bring many benefits, including long-term follow-up and care, reducing the significant financial burden for the patient, and healthcare systems. Transportation can increase personal empowerment and flexibility in life, and ultimately lead to significant positive effects on the quality of life of these patients.