Protótipo de aplicativo centrado no paciente para gestão do autocuidado em Esclerose Lateral Amiotrófica

Abstract

Introduction: Introduction: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that primarily affects the motor system of human beings. The patient affected by this disorder gradually loses the ability to perform routine tasks such as speaking, eating or walking. It is believed that in chronic conditions, self-care can improve the quality of life for active patients involved in managing their conditions. From this perspective, technologies can function as means of promoting this self-care, and nursing professionals can act in its management, since they are able to clarify doubts and transmit information, qualifying the patient and his family. Objective: To propose a prototype patient-centered app for self-care management in Amyotrophic Lateral Sclerosis. Methodological procedures: A methodological study was carried out by means of User Centered Design (UCD). This strategy aims at the participation and collaboration of users in the development of applications, promoting the creation of useful products that meet the demands and characteristics of users and are easy to use, and is composed of four stages: analysis, design, construction, and evaluation. In this study, the first and second stages were performed. In the first stage, a Scoping Review was carried out with the objective of mapping the main evidence about self- care in Amyotrophic Lateral Sclerosis. In the second stage, the process of creating the application prototype was described based on the data collected previously. Results: The studies from the Scoping Review showed that although the disease has a rapid progression and is limiting, the manifestations of self-care in ALS consist mainly of physical, psychological and respiratory aspects. Patients feel the need to have more autonomy and to participate in decision making. The interface of the application was created through the graphic design platform "Canva Pro", with ten layouts (registration and login page, main page and registration sections, medical record, self-care, telecare, drug therapy, health education, and consultations) in the user version, and eight layouts (registration and login page, main page and registration sections, patients, telecare, health education, and consultations) in the professional version. Conclusion: It is expected that the application resulting from this prototype will consolidate the participation and joint work between patient-family-multidisciplinary team, aiming to reach all the biopsychosocial aspects of these individuals, giving more autonomy to the patient, reducing the overload of family members and caregivers, and allowing an integral care by the nursing and also by the multidisciplinary team, composed of nurses, physiotherapists, physicians, speech therapists, nutritionists, and psychologists.