RESUMO
BACKGROUND: Due to the complexities of advanced illnesses and their treatments, it can be difficult for patients in palliative care to maintain their quality of life. Telemedicine interventions in chronic disease management engage patients in their care, provide continuous follow-up by their health care providers, identify symptoms earlier, and allow a quick response to illness-related decline. OBJECTIVE: We aimed to detail and reflect on the design of an app and evaluate its feasibility to monitor the clinical situation of patients with advanced illnesses. METHODS: This study used a mixed methods design using qualitative methods to inform app development and design and quantitative methods for data collection and analysis of patient evaluations. Palliative care units in 2 Spanish university hospitals (Nuestra Señora de la Candelaria in Santa Cruz de Tenerife and University Hospital Complex of Ferrol in A Coruña) carried out a literature review, designed the study protocol, and obtained approval from the Ethics Committee from June to December 2020. In addition, focus group meetings were held, and the design and technical development of the app were elaborated on and subsequently presented in the participating palliative care units. From January to March 2021, the app was made public on the App Store and Play Store, and a pilot study with patients was carried out in April to September 2021. RESULTS: Six focus group meetings were held that included doctors, nurses, app developers, technology consultants, and sponsors. In addition, the technology consultants presented their results 3 times in the participating palliative care units to obtain feedback. After the app's final design, it was possible to publish it on the usual servers and begin its evaluation in patients (n=60, median age 72 years). Sixty percent (n=36) of the participants were women and 40% (n=24) were men. The most prevalent advanced pathology was cancer (n=46, 76%), followed by other diseases (n=7, 12%) and amyotrophic lateral sclerosis (n=5, 8%). Seventy percent (n=42) of the patients were already in follow-up prior to the start of the study, while 30% (n=18) were included at the start of their follow-up. The information in the app was collected and entered by relatives or caregivers in 60% (n=36) of the cases. The median follow-up was 52 (IQR 14-104) days. In all, 69% (n=41) had a follow-up >30 days (10 were deceased and 9 were missing data). The use of the different sections of the app ranged from 37% (n=22) for the glycemic record to 90% (n=54) for the constipation scale). Patients and caregivers were delighted with its ease of use and usefulness. CONCLUSIONS: Incorporating an intelligent remote patient monitoring system in clinical practice for patients in palliative care can improve access to health services and provide more information to professionals.
RESUMO
Antecedentes: Las iniciativas de telemedicina involucran a los pacientes en sus cuidados, favorecen la adherencia a los tratamientos y ayudan a centrar las valoraciones presenciales en los problemas más importantes, mejorando en general la atención.Objetivo: Diseño y evaluación de la factibilidad de una app dirigida a monitorizar la situación clínica en pacientes con enfermedades avanzadas.Material y métodos: Tipo de estudio: cualitativo (Diseño app) - cuantitativo (Evaluación en pacientes). Ubicación: Unidades de Cuidados Paliativos del Complejo Hospital Universitario Ntra. Sra. de Candelaria (CHUNSC) en Tenerife y Complejo Hospital Universitario de Ferrol (CHUF). Intervención: diseño app entre profesionales expertos en enfermedades avanzadas y un equipo de desarrollo de app sanitarias. Evaluación: análisis del uso de app por parte de pacientes y profesionales, aportación al seguimiento diario, y satisfacción con su uso. (AU)
Background: Telemedicine initiatives involve patients in their care, promote adherence to treatment, and help focus face-to-face assessments on the most important problems, improving care in general.Objective: Design and evaluation of the feasibility of an app aimed at monitoring clinical status in patients with advanced diseases.Material and methods: Type of study: qualitative (app design)-quantitative (evaluation in patients). Location: Palliative Care Units at the Ntra. Sra. de Candelaria University Hospital Complex (CHUNSC) in Tenerife, and Ferrol University Hospital Complex (CHUF). Intervention: app development by experts in advanced diseases and a health app development team. Evaluation: analysis of the use of the app by patients and professionals, contribution to daily monitoring, and satisfaction with its use. (AU)