Universität zu Köln

Godinas, Laurent ORCID: 0000-0003-2214-5879, Iyer, Keerthana ORCID: 0000-0002-4384-6781, Meszaros, Gergely, Quarck, Rozenn, Escribano-Subias, Pilar, Noordegraaf, Anton Vonk, Jansa, Pavel ORCID: 0000-0002-3711-7064, D'Alto, Michele, Luknar, Milan, Ilic, Senka Milutinov, Belge, Catharina, Sitbon, Olivier, Reis, Abilio, Rosenkranz, Stephan, Pepke-Zaba, Joanna, Humbert, Marc and Delcroix, Marion ORCID: 0000-0001-8394-9809 (2021). PH CARE COVID survey: an international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic. Orphanet J. Rare Dis., 16 (1). LONDON: BMC. ISSN 1750-1172

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Abstract

Background During the COVID-19 pandemic, most of the health care systems suspended their non-urgent activities. This included the cancellation of consultations for patients with rare diseases, such as severe pulmonary hypertension (PH), resulting in potential medication shortage and loss of follow-up. Thus, the aim of the study was to evaluate PH patient health status evolution, access to health care and mental health experience during the early phase of the pandemic. Methods We conducted an online patient survey, available in 16 languages, between 22/05/2020 and 28/06/2020. The survey included questions corresponding to demographic, COVID-19 and PH related information. Results 1073 patients (or relatives, 27%) from 52 countries all over the world participated in the survey. Seventy-seven percent (77%) of responders reported a diagnosis of pulmonary arterial hypertension and 15% of chronic thromboembolic PH. The COVID-19 related events were few: only 1% of all responders reported a diagnosis of COVID-19. However, 8% of patients reported health deterioration possibly related to PH, and 4% hospitalization for PH. Besides, 11% of the patients reported difficulties to access their PH expert centre, and 3% interruption of treatment due to shortage of medication. Anxiety or depression was reported by 67% of the participants. Conclusion Although COVID-19 incidence in PH patients was low, PH related problems occurred frequently as the pandemic progressed, including difficulties to have access to specialized care. The importance of primary health care was emphasized. Further studies are needed to evaluate the long-term consequences of COVID-related PH care disruption.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Godinas, Laurent UNSPECIFIED orcid.org/0000-0003-2214-5879 UNSPECIFIED Iyer, Keerthana UNSPECIFIED orcid.org/0000-0002-4384-6781 UNSPECIFIED Meszaros, Gergely UNSPECIFIED UNSPECIFIED UNSPECIFIED Quarck, Rozenn UNSPECIFIED UNSPECIFIED UNSPECIFIED Escribano-Subias, Pilar UNSPECIFIED UNSPECIFIED UNSPECIFIED Noordegraaf, Anton Vonk UNSPECIFIED UNSPECIFIED UNSPECIFIED Jansa, Pavel UNSPECIFIED orcid.org/0000-0002-3711-7064 UNSPECIFIED D'Alto, Michele UNSPECIFIED UNSPECIFIED UNSPECIFIED Luknar, Milan UNSPECIFIED UNSPECIFIED UNSPECIFIED Ilic, Senka Milutinov UNSPECIFIED UNSPECIFIED UNSPECIFIED Belge, Catharina UNSPECIFIED UNSPECIFIED UNSPECIFIED Sitbon, Olivier UNSPECIFIED UNSPECIFIED UNSPECIFIED Reis, Abilio UNSPECIFIED UNSPECIFIED UNSPECIFIED Rosenkranz, Stephan UNSPECIFIED UNSPECIFIED UNSPECIFIED Pepke-Zaba, Joanna UNSPECIFIED UNSPECIFIED UNSPECIFIED Humbert, Marc UNSPECIFIED UNSPECIFIED UNSPECIFIED Delcroix, Marion UNSPECIFIED orcid.org/0000-0001-8394-9809 UNSPECIFIED
URN:	urn:nbn:de:hbz:38-603381
DOI:	10.1186/s13023-021-01752-1
Journal or Publication Title:	Orphanet J. Rare Dis.
Volume:	16
Number:	1
Date:	2021
Publisher:	BMC
Place of Publication:	LONDON
ISSN:	1750-1172
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language GLYCEMIC CONTROL; CANCER; IMPACT; LOCKDOWN Multiple languages Genetics & Heredity; Medicine, Research & Experimental Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/60338