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Evaluation of a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension: The CBS-PAH study protocol

INTRODUCTION: Pulmonary arterial hypertension (PAH) is a rare, multifactorial, chronic condition that requires ongoing monitoring and assessment. PAHcare™ is a novel, patient-centered digital platform that provides software intended for use on patients' mobile phones (downloadable application)...

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Autores principales: Pérez Peñate, Gregorio, Ochoa Parra, Nuria, Domingo Morera, Juan Antonio, Martínez Meñaca, Amaya, López Ramón, Marta, Cadenas Menéndez, Sergio, León Marrero, Fernando, Gómara de la Cal, Sara, Ghadban Garrido, Cristina, Royo Tolosana, Patricia, Martin Puentes, Javier, Aldonza Aguayo, Rebeca, Mahdavi, Hadis, Bacchini Jeanneret, Gabriela, Escribano Subías, Pilar
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9768478/
https://www.ncbi.nlm.nih.gov/pubmed/36568758
http://dx.doi.org/10.3389/fpubh.2022.954487
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author Pérez Peñate, Gregorio
Ochoa Parra, Nuria
Domingo Morera, Juan Antonio
Martínez Meñaca, Amaya
López Ramón, Marta
Cadenas Menéndez, Sergio
León Marrero, Fernando
Gómara de la Cal, Sara
Ghadban Garrido, Cristina
Royo Tolosana, Patricia
Martin Puentes, Javier
Aldonza Aguayo, Rebeca
Mahdavi, Hadis
Bacchini Jeanneret, Gabriela
Escribano Subías, Pilar
author_facet Pérez Peñate, Gregorio
Ochoa Parra, Nuria
Domingo Morera, Juan Antonio
Martínez Meñaca, Amaya
López Ramón, Marta
Cadenas Menéndez, Sergio
León Marrero, Fernando
Gómara de la Cal, Sara
Ghadban Garrido, Cristina
Royo Tolosana, Patricia
Martin Puentes, Javier
Aldonza Aguayo, Rebeca
Mahdavi, Hadis
Bacchini Jeanneret, Gabriela
Escribano Subías, Pilar
author_sort Pérez Peñate, Gregorio
collection PubMed
description INTRODUCTION: Pulmonary arterial hypertension (PAH) is a rare, multifactorial, chronic condition that requires ongoing monitoring and assessment. PAHcare™ is a novel, patient-centered digital platform that provides software intended for use on patients' mobile phones (downloadable application) and web-based dashboards for use by physicians and health coaches (HC). We describe herein the protocol of a clinical study aimed at evaluating the clinical benefit and safety of PAHcare™ for the routine management of patients with PAH. METHODS AND ANALYSIS: In this prospective, single cohort, multicenter study, 50 patients with PAH will be recruited at six specialized PAH units from reference hospitals of the public Spanish healthcare system. The PAHcare™ digital health platform allows patients to log health and lifestyle information while also providing structured content for patient education, medication reminders, and behavioral and lifestyle coaching from a remote HC. Evaluation will be primarily focused on the impact of the platform use on the patient's health-related quality of life (HRQoL) via questionnaires completion through electronic patient-reported outcomes. Moreover, the analysis of the impact on the patient's functional status, signs and symptoms of PAH, patient costs and healthcare resource utilization, satisfaction, knowledge of the disease and its management, and adherence to and safety of the platform will be secondary outcomes. The clinical investigation started in July 2021 and is expected to end by September 2022. DISCUSSION: The PAHcare™ platform is anticipated to provide direct benefits to healthcare professionals, patients, and caregivers. These include the simplification of the multidisciplinary approach needed to tailor routine PAH management, enhancement of the patient/healthcare professional interaction, patient's empowerment to become more actively involved in the management and treatment of the disease, and increase of the patient's and caregiver's knowledge on PAH.
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spelling pubmed-97684782022-12-22 Evaluation of a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension: The CBS-PAH study protocol Pérez Peñate, Gregorio Ochoa Parra, Nuria Domingo Morera, Juan Antonio Martínez Meñaca, Amaya López Ramón, Marta Cadenas Menéndez, Sergio León Marrero, Fernando Gómara de la Cal, Sara Ghadban Garrido, Cristina Royo Tolosana, Patricia Martin Puentes, Javier Aldonza Aguayo, Rebeca Mahdavi, Hadis Bacchini Jeanneret, Gabriela Escribano Subías, Pilar Front Public Health Public Health INTRODUCTION: Pulmonary arterial hypertension (PAH) is a rare, multifactorial, chronic condition that requires ongoing monitoring and assessment. PAHcare™ is a novel, patient-centered digital platform that provides software intended for use on patients' mobile phones (downloadable application) and web-based dashboards for use by physicians and health coaches (HC). We describe herein the protocol of a clinical study aimed at evaluating the clinical benefit and safety of PAHcare™ for the routine management of patients with PAH. METHODS AND ANALYSIS: In this prospective, single cohort, multicenter study, 50 patients with PAH will be recruited at six specialized PAH units from reference hospitals of the public Spanish healthcare system. The PAHcare™ digital health platform allows patients to log health and lifestyle information while also providing structured content for patient education, medication reminders, and behavioral and lifestyle coaching from a remote HC. Evaluation will be primarily focused on the impact of the platform use on the patient's health-related quality of life (HRQoL) via questionnaires completion through electronic patient-reported outcomes. Moreover, the analysis of the impact on the patient's functional status, signs and symptoms of PAH, patient costs and healthcare resource utilization, satisfaction, knowledge of the disease and its management, and adherence to and safety of the platform will be secondary outcomes. The clinical investigation started in July 2021 and is expected to end by September 2022. DISCUSSION: The PAHcare™ platform is anticipated to provide direct benefits to healthcare professionals, patients, and caregivers. These include the simplification of the multidisciplinary approach needed to tailor routine PAH management, enhancement of the patient/healthcare professional interaction, patient's empowerment to become more actively involved in the management and treatment of the disease, and increase of the patient's and caregiver's knowledge on PAH. Frontiers Media S.A. 2022-12-07 /pmc/articles/PMC9768478/ /pubmed/36568758 http://dx.doi.org/10.3389/fpubh.2022.954487 Text en Copyright © 2022 Pérez Peñate, Ochoa Parra, Domingo Morera, Martínez Meñaca, López Ramón, Cadenas Menéndez, León Marrero, Gómara de la Cal, Ghadban Garrido, Royo Tolosana, Martin Puentes, Aldonza Aguayo, Mahdavi, Bacchini Jeanneret and Escribano Subías. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Public Health
Pérez Peñate, Gregorio
Ochoa Parra, Nuria
Domingo Morera, Juan Antonio
Martínez Meñaca, Amaya
López Ramón, Marta
Cadenas Menéndez, Sergio
León Marrero, Fernando
Gómara de la Cal, Sara
Ghadban Garrido, Cristina
Royo Tolosana, Patricia
Martin Puentes, Javier
Aldonza Aguayo, Rebeca
Mahdavi, Hadis
Bacchini Jeanneret, Gabriela
Escribano Subías, Pilar
Evaluation of a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension: The CBS-PAH study protocol
title Evaluation of a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension: The CBS-PAH study protocol
title_full Evaluation of a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension: The CBS-PAH study protocol
title_fullStr Evaluation of a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension: The CBS-PAH study protocol
title_full_unstemmed Evaluation of a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension: The CBS-PAH study protocol
title_short Evaluation of a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension: The CBS-PAH study protocol
title_sort evaluation of a digital health system (pahcare™) for routine care of patients with pulmonary arterial hypertension: the cbs-pah study protocol
topic Public Health
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9768478/
https://www.ncbi.nlm.nih.gov/pubmed/36568758
http://dx.doi.org/10.3389/fpubh.2022.954487
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