The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments
Pulmonary hypertension (PH) adds a substantial disease burden, including higher mortality, when associated with interstitial lung disease (ILD), a severe, chronic, progressive condition. Yet little is known of the lived experiences, perspectives, priorities, and viewpoints of patients and carers liv...
| Autores: | , , , , , , , , , , |
|---|---|
| Tipo de recurso: | artículo |
| Estado: | Versión publicada |
| Fecha de publicación: | 2024 |
| País: | España |
| Institución: | Universitat Pompeu Fabra |
| Repositorio: | Repositorio Digital de la UPF |
| OAI Identifier: | oai:repositori.upf.edu:10230/70903 |
| Acceso en línea: | http://hdl.handle.net/10230/70903 http://dx.doi.org/10.1002/pul2.12405 |
| Access Level: | acceso abierto |
| Palabra clave: | Health‐related quality of life Interstitial lung disease Patient experience data Patient‐involvement Pulmonary hypertension |
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The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatmentsPiccari, LucillaKovacs, GaborJones, SteveSkaara, HallRoca Herms, ClaudiaBacchini Jeanneret, Gabriela SilvinaCalzado Vinardell, MelquiadesGonzalez-Rojas Guix, NuriaFernandez Delgado, MiriamGálvez García, Héctor, 1989-Schwicker, DavidHealth‐related quality of lifeInterstitial lung diseasePatient experience dataPatient‐involvementPulmonary hypertensionPulmonary hypertension (PH) adds a substantial disease burden, including higher mortality, when associated with interstitial lung disease (ILD), a severe, chronic, progressive condition. Yet little is known of the lived experiences, perspectives, priorities, and viewpoints of patients and carers living with PH-ILD. The Voice of the Patient meeting at the center of this qualitative research study aims to provide these difficult-to-obtain insights from a European perspective for the first time. The multistakeholder approach brought together four PH-ILD patients, three primary caregivers, two patient associations, clinical experts, sponsor representatives, and a facilitator. Of the six major themes identified in the thematic analysis, symptoms, and physical limitations were the most impactful. Shortness of breath was the most bothersome symptom affecting patients daily. Further symptoms included fatigue, cough, dizziness, syncope, edema, and palpitations. Physical limitations focused on reduced mobility, impacting patients' ability to perform daily tasks, hobbies, sports, and to enjoy travel. Existing antifibrotic and pulmonary arterial hypertension-targeted treatments were perceived as beneficial. However, despite advances in treatment, severe disease burdens and high unmet medical needs persist from the perspectives of patients. Most meaningful to patients' daily wellbeing was supplemental oxygen, enabling greater mobility. Patients and carers reported difficulties and barriers in navigating the healthcare system and obtaining adequate information to reduce their considerable uncertainties, documenting the substantial challenges that rare and complex conditions such as PH-ILD pose for routine clinical practice beyond PH expert centers and indicating an urgent need for high-quality patient- and clinician-directed information to support patient-centered care.Wiley202520252024info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttp://hdl.handle.net/10230/70903http://dx.doi.org/10.1002/pul2.12405reponame:Repositorio Digital de la UPFinstname:Universitat Pompeu FabraInglésPulm Circ. 2024 Jun 22;14(2):e12405© 2024 The Author(s). Pulmonary Circulation published by John Wiley & Sons Ltd on behalf of Pulmonary Vascular Research Institute. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.http://creativecommons.org/licenses/by-nc/4.0/info:eu-repo/semantics/openAccessoai:repositori.upf.edu:10230/709032026-06-12T07:21:37Z |
| dc.title.none.fl_str_mv |
The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments |
| title |
The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments |
| spellingShingle |
The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments Piccari, Lucilla Health‐related quality of life Interstitial lung disease Patient experience data Patient‐involvement Pulmonary hypertension |
| title_short |
The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments |
| title_full |
The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments |
| title_fullStr |
The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments |
| title_full_unstemmed |
The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments |
| title_sort |
The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments |
| dc.creator.none.fl_str_mv |
Piccari, Lucilla Kovacs, Gabor Jones, Steve Skaara, Hall Roca Herms, Claudia Bacchini Jeanneret, Gabriela Silvina Calzado Vinardell, Melquiades Gonzalez-Rojas Guix, Nuria Fernandez Delgado, Miriam Gálvez García, Héctor, 1989- Schwicker, David |
| author |
Piccari, Lucilla |
| author_facet |
Piccari, Lucilla Kovacs, Gabor Jones, Steve Skaara, Hall Roca Herms, Claudia Bacchini Jeanneret, Gabriela Silvina Calzado Vinardell, Melquiades Gonzalez-Rojas Guix, Nuria Fernandez Delgado, Miriam Gálvez García, Héctor, 1989- Schwicker, David |
| author_role |
author |
| author2 |
Kovacs, Gabor Jones, Steve Skaara, Hall Roca Herms, Claudia Bacchini Jeanneret, Gabriela Silvina Calzado Vinardell, Melquiades Gonzalez-Rojas Guix, Nuria Fernandez Delgado, Miriam Gálvez García, Héctor, 1989- Schwicker, David |
| author2_role |
author author author author author author author author author author |
| dc.subject.none.fl_str_mv |
Health‐related quality of life Interstitial lung disease Patient experience data Patient‐involvement Pulmonary hypertension |
| topic |
Health‐related quality of life Interstitial lung disease Patient experience data Patient‐involvement Pulmonary hypertension |
| description |
Pulmonary hypertension (PH) adds a substantial disease burden, including higher mortality, when associated with interstitial lung disease (ILD), a severe, chronic, progressive condition. Yet little is known of the lived experiences, perspectives, priorities, and viewpoints of patients and carers living with PH-ILD. The Voice of the Patient meeting at the center of this qualitative research study aims to provide these difficult-to-obtain insights from a European perspective for the first time. The multistakeholder approach brought together four PH-ILD patients, three primary caregivers, two patient associations, clinical experts, sponsor representatives, and a facilitator. Of the six major themes identified in the thematic analysis, symptoms, and physical limitations were the most impactful. Shortness of breath was the most bothersome symptom affecting patients daily. Further symptoms included fatigue, cough, dizziness, syncope, edema, and palpitations. Physical limitations focused on reduced mobility, impacting patients' ability to perform daily tasks, hobbies, sports, and to enjoy travel. Existing antifibrotic and pulmonary arterial hypertension-targeted treatments were perceived as beneficial. However, despite advances in treatment, severe disease burdens and high unmet medical needs persist from the perspectives of patients. Most meaningful to patients' daily wellbeing was supplemental oxygen, enabling greater mobility. Patients and carers reported difficulties and barriers in navigating the healthcare system and obtaining adequate information to reduce their considerable uncertainties, documenting the substantial challenges that rare and complex conditions such as PH-ILD pose for routine clinical practice beyond PH expert centers and indicating an urgent need for high-quality patient- and clinician-directed information to support patient-centered care. |
| publishDate |
2024 |
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2024 2025 2025 |
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info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
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article |
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publishedVersion |
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http://hdl.handle.net/10230/70903 http://dx.doi.org/10.1002/pul2.12405 |
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http://hdl.handle.net/10230/70903 http://dx.doi.org/10.1002/pul2.12405 |
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Inglés |
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Inglés |
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Pulm Circ. 2024 Jun 22;14(2):e12405 |
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http://creativecommons.org/licenses/by-nc/4.0/ info:eu-repo/semantics/openAccess |
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http://creativecommons.org/licenses/by-nc/4.0/ |
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openAccess |
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application/pdf application/pdf |
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Wiley |
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Wiley |
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reponame:Repositorio Digital de la UPF instname:Universitat Pompeu Fabra |
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Universitat Pompeu Fabra |
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