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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)...
Autores principales: | , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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Frontiers Media S.A.
2022
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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. |
format | Online Article Text |
id | pubmed-9768478 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
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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