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Soriano JAuthorAncochea JAuthorValenzuela CAuthorGómez Carrera LAuthor

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Demographic and clinical profile of idiopathic pulmonary fibrosis patients in Spain: The SEPAR National Registry

Publicated to:RESPIRATORY RESEARCH. 20 (1): 127- - 2019-06-17 20(1), DOI: 10.1186/s12931-019-1084-0

Authors: Fernandez-Fabrellas, Estrella; Molina-Molina, Maria; Soriano, Joan B; Rodriguez Portal, Jose Antonio; Ancochea, Julio; Valenzuela, Claudia; Xaubet, Antoni; Aburto Barrenetxea, M; Alfageme Michavila, I; Bollo de Miguel, E; Cano, E; Casanova Espinosa, A; Castillo Villegas, D; Figuerola Mendal, J A; Garcia Sevila, R; Gaudo Navarro, J, I; Gomez Carrera, L; Gonzalez, J M; Herrera Lara, S; Laporta Hernandez, R; Marin Gonzalez, M; Nieto Barbero, M A; Portillo, K; Romero, A D; Sanchez Simon-Talero, R; Sancho Chust, J N; Sellares Torres, J; Soler Sempere, M J; Sauleda Roig, J; Tomas Lopez, L; Villanueva Montes, M

Affiliations

Complejo Asistencial Univ Leon, Leon, Spain - Author
Consorcio Hosp Gen Univ, Pulmonol Dept, Valencia, Spain - Author
Hosp Badalona Germans Trias & Pujol, Barcelona, Spain - Author
Hosp Clin Barcelona, Inst Torax, Barcelona, Spain - Author
Hosp Clin Barcelona, Pulmonol Dept, Barcelona, Spain - Author
Hosp Clin San Carlos, Madrid, Spain - Author
Hosp Clin Univ Lozano Blesa, Zaragoza, Spain - Author
Hosp Clin Univ Valencia, Valencia, Spain - Author
Hosp Galdakao Usansolo, Bizkaia, Spain - Author
Hosp Gen Univ Alicante, Alicante, Spain - Author
Hosp Gen Univ Elche, Alicante, Spain - Author
Hosp San Agustin, Asturias, Spain - Author
Hosp Santa Creu & Sant Pau, Barcelona, Spain - Author
Hosp Univ Araba, Txagorritxu, Alaba, Spain - Author
Hosp Univ Bellvitge, Resp Dept, Interstitial Dis Unit, Carrer Feixa Llarga S-N, Barcelona 08907, Spain - Author
Hosp Univ Doctor Peset, Valencia, Spain - Author
Hosp Univ Henares, Madrid, Spain - Author
Hosp Univ La Paz, Madrid, Spain - Author
Hosp Univ La Princesa, Pulmonol Dept, Madrid, Spain - Author
Hosp Univ Lucus Augusti, Lugo, Spain - Author
Hosp Univ Nuestra Senora Perpetuo Socorro, Albacete, Spain - Author
Hosp Univ Puerta Hierro Majadahonda, Madrid, Spain - Author
Hosp Univ Ramon y Cajal, Madrid, Spain - Author
Hosp Univ Salamanca, Salamanca, Spain - Author
Hosp Univ Son Espases, Palma De Mallorca, Illes Balears, Spain - Author
Hosp Univ St Joan Alacant, Alicante, Spain - Author
Hosp Univ Virgen de las Nieves, Granada, Spain - Author
Hosp Univ Virgen de Valme, Seville, Spain - Author
Hosp Univ Virgen del Rocio, Pulmonol Dept, Seville, Spain - Author
Traslational Medicine. Cardiovascular, Respiratory and Systemic Diseases and cellular aging Program. Pneumology - Author
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Abstract

© 2019 The Author(s). Background: Little is known on the characteristics of patients diagnosed with idiopathic pulmonary fibrosis (IPF) in Spain. We aimed to characterize the demographic and clinical profile of IPF patients included in the IPF National Registry of the Spanish Respiratory Society (SEPAR). Methods: This is a prospective, observational, multicentre and nationwide study that involved 608 IPF patients included in the SEPAR IPF Registry up to June 27th, 2017, and who received any treatment for their disease. IPF patients were predominantly males, ex-smokers, and aged in their 70s, similar to other registries. Results: Upon inclusion, mean ± SD predicted forced vital capacity was 77.6% ± 19.4, diffusing capacity for carbon monoxide was 48.5% ± 17.7, and the 6-min walk distance was 423.5 m ± 110.4. The diagnosis was mainly established on results from the high-resolution computed tomography in the proper clinical context (55.0% of patients), while 21.2% of patients required invasive procedures (surgical lung biopsy) for definitive diagnosis. Anti-fibrotic treatment was prescribed in 69.4% of cases, 51.5% pirfenidone and 17.9% nintedanib, overall with a good safety profile. Conclusions: The SEPAR IPF Registry should help to further characterize current characteristics and future trends of IPF patients in Spain and compare/pool them with other registries and cohorts.

Keywords

anti-fibrotic treatmentidiopathic pulmonary fibrosisnational registryseparAgedAged, 80 and overAnorexiaAnti-fibrotic treatmentAnti-inflammatory agents, non-steroidalArticleBody weight lossClinical featureClinical trialControlled studyCorticosteroidDemographyDisease registryDizzinessDrug dose reductionDrug fatalityDrug safetyDrug withdrawalFatigueFemaleFibrosing alveolitisForced vital capacityGastrointestinal symptomHigh resolution computer tomographyHumanHuman tissueHumansIdiopathic pulmonary fibrosisLiver enzymeLung biopsyLung diffusion capacityLung function testLung transplantationMajor clinical studyMaleMedical societyMiddle agedMulticenter studyNational registryNintedanibNonsteroid antiinflammatory agentObservational studyOxygenOxygen therapyPhotosensitivityPirfenidoneProspective studiesProspective studyProton pump inhibitorPulmonary rehabilitationPyridone derivativePyridonesRegisterRegistriesRetrospective studiesRetrospective studySeparSerodiagnosisSide effectSix minute walk testSmokingSocieties, medicalSpainThorax radiographyVery elderlyWalking distance

Quality index

Bibliometric impact. Analysis of the contribution and dissemination channel

The work has been published in the journal RESPIRATORY RESEARCH due to its progression and the good impact it has achieved in recent years, according to the agency Scopus (SJR), it has become a reference in its field. In the year of publication of the work, 2019, it was in position , thus managing to position itself as a Q1 (Primer Cuartil), in the category Pulmonary and Respiratory Medicine.

From a relative perspective, and based on the normalized impact indicator calculated from World Citations provided by WoS (ESI, Clarivate), it yields a value for the citation normalization relative to the expected citation rate of: 2.14. This indicates that, compared to works in the same discipline and in the same year of publication, it ranks as a work cited above average. (source consulted: ESI Nov 14, 2024)

This information is reinforced by other indicators of the same type, which, although dynamic over time and dependent on the set of average global citations at the time of their calculation, consistently position the work at some point among the top 50% most cited in its field:

  • Weighted Average of Normalized Impact by the Scopus agency: 2.44 (source consulted: FECYT Feb 2024)
  • Field Citation Ratio (FCR) from Dimensions: 11.22 (source consulted: Dimensions Jun 2025)

Specifically, and according to different indexing agencies, this work has accumulated citations as of 2025-06-29, the following number of citations:

  • WoS: 36
  • Scopus: 38
  • Europe PMC: 20

Impact and social visibility

From the perspective of influence or social adoption, and based on metrics associated with mentions and interactions provided by agencies specializing in calculating the so-called "Alternative or Social Metrics," we can highlight as of 2025-06-29:

  • The use, from an academic perspective evidenced by the Altmetric agency indicator referring to aggregations made by the personal bibliographic manager Mendeley, gives us a total of: 81.
  • The use of this contribution in bookmarks, code forks, additions to favorite lists for recurrent reading, as well as general views, indicates that someone is using the publication as a basis for their current work. This may be a notable indicator of future more formal and academic citations. This claim is supported by the result of the "Capture" indicator, which yields a total of: 82 (PlumX).

With a more dissemination-oriented intent and targeting more general audiences, we can observe other more global scores such as:

  • The Total Score from Altmetric: 8.95.
  • The number of mentions on the social network Facebook: 1 (Altmetric).
  • The number of mentions on the social network X (formerly Twitter): 14 (Altmetric).

It is essential to present evidence supporting full alignment with institutional principles and guidelines on Open Science and the Conservation and Dissemination of Intellectual Heritage. A clear example of this is:

  • The work has been submitted to a journal whose editorial policy allows open Open Access publication.
  • Assignment of a Handle/URN as an identifier within the deposit in the Institutional Repository: https://repositorio.uam.es/handle/10486/689033