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Yet little is known of the lived experiences, perspectives, priorities, and viewpoints of patients and carers living with PH\u2010ILD. The Voice of the Patient meeting at the center of this qualitative research study aims to provide these difficult\u2010to\u2010obtain insights from a European perspective for the first time. The multistakeholder approach brought together four PH\u2010ILD 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\u2019 ability to perform daily tasks, hobbies, sports, and to enjoy travel. Existing antifibrotic and pulmonary arterial hypertension\u2010targeted 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\u2019 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\u2010ILD pose for routine clinical practice beyond PH expert centers and indicating an urgent need for high\u2010quality patient\u2010 and clinician\u2010directed information to support patient\u2010centered care.<\/jats:p>","DOI":"10.1002\/pul2.12405","type":"journal-article","created":{"date-parts":[[2024,6,23]],"date-time":"2024-06-23T04:59:02Z","timestamp":1719118742000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments"],"prefix":"10.1002","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2241-7523","authenticated-orcid":false,"given":"Lucilla","family":"Piccari","sequence":"first","affiliation":[{"name":"Department of Pulmonology Hospital del Mar Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3709-2183","authenticated-orcid":false,"given":"Gabor","family":"Kovacs","sequence":"additional","affiliation":[{"name":"Division of Pulmonology University Clinic for Internal Medicine, Medical University of Graz Graz Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8258-6778","authenticated-orcid":false,"given":"Steve","family":"Jones","sequence":"additional","affiliation":[{"name":"European Pulmonary Fibrosis Federation (EU\u2010PFF) Overijse Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hall","family":"Skaara","sequence":"additional","affiliation":[{"name":"Pulmonary Hypertension Association Europe (PHA Europe) Vienna Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia Roca","family":"Herms","sequence":"additional","affiliation":[{"name":"Ferrer Internacional, S.A. 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