The Lancet Regional Health. Europe (Sep 2023)
Impact of elexacaftor/tezacaftor/ivacaftor on lung function, nutritional status, pulmonary exacerbation frequency and sweat chloride in people with cystic fibrosis: real-world evidence from the German CF RegistryResearch in context
- Sivagurunathan Sutharsan,
- Stefanie Dillenhoefer,
- Matthias Welsner,
- Florian Stehling,
- Folke Brinkmann,
- Manuel Burkhart,
- Helmut Ellemunter,
- Anna-Maria Dittrich,
- Christina Smaczny,
- Olaf Eickmeier,
- Matthias Kappler,
- Carsten Schwarz,
- Sarah Sieber,
- Susanne Naehrig,
- Lutz Naehrlich,
- Klaus Tenbrock,
- Claus Pfannenstiel,
- Dirk Steffen,
- Jochen Meister,
- Britta Welzenbach,
- Anette Scharschinger,
- Markus Kratz,
- Maike Pincus,
- Tobias Tenenbaum,
- Mirjam Stahl,
- Kerstin Landwehr,
- Stefanie Dillenhöfer,
- Hans Kössel,
- Petra Kaiser,
- Manfred Käding,
- Simone Stolz,
- Stefan Blaas,
- Jutta Hammermann,
- Monika Gappa,
- Antje Schuster,
- Dana Spittel,
- Sabine Zirlik,
- Sabina Schmitt,
- Florian Stehling,
- Sivagurunathan Sutharsan,
- Joachim Bargon,
- Malte Cremer,
- Christina Smaczny,
- Sebastian Fähndrich,
- Andrea Heinzmann,
- Lutz Nährlich,
- Stefan Kuhnert,
- Sebastian Schmidt,
- Bettina Wollschläger,
- Anna Nolde,
- Inka Held,
- Wolfgang Kamin,
- Felix C. Ringshausen,
- Anna-Maria Dittrich,
- Sabine Wege,
- Olaf Sommerburg,
- Norbert Geier,
- Sara Lisa Fleser,
- Heinrike Wilkens,
- Helmut Ellemunter,
- Michael Lorenz,
- Paul Vöhringer,
- Martin Schebek,
- Christian Timke,
- Ingrid Bobis,
- Thomas Nüßlein,
- Doris Dieninghoff,
- Ernst Rietschel,
- Bastian Klinkhammer,
- Freerk Prenzel,
- Alexandra Wald,
- Axel Kempa,
- Folke Brinkmann,
- Eva Lücke,
- Ines Adams,
- Krystyna Poplawska,
- Simone Lehmkühler,
- Monika Bauck,
- Anne Pfülb,
- Rainald Fischer,
- Gudrun Schopper,
- Susanne Nährig,
- Matthias Griese,
- Jörg Grosse,
- Peter Küster,
- Birte KinderHolger Köster,
- Susanne Büsing,
- Margarethe Pohl,
- Carsten Schwarz,
- Andreas Artlich,
- Alexander Kiefer,
- Manfred Ballmann,
- Nikola Gjorgjevski,
- Markus A. Rose,
- Friederike Ruf,
- Rolf Mahlberg,
- Wolfgang Thomas,
- Ute Graepler,
- Sebastian Bode,
- hilipp Meyn,
- Josef Rosenecker,
- Cordula Koerner,
- Klaus-Michael Keller,
- Tina Teßmer,
- Helge Hebestreit,
- Gerhild Lohse
Affiliations
- Sivagurunathan Sutharsan
- Department of Pulmonary Medicine, University Hospital Essen-Ruhrlandklinik, Adult Cystic Fibrosis Center, University of Duisburg-Essen, Essen, Germany; Corresponding author. Division of Cystic Fibrosis, Department of Pulmonary Medicine, University Medicine Essen-Ruhrlandklinik, University of Duisburg-Essen, Essen, Germany.
- Stefanie Dillenhoefer
- Department of Pediatric Pulmonology, Cystic Fibrosis Center, University Children's Hospital of Ruhr University Bochum at St. Josef-Hospital, Bochum, Germany
- Matthias Welsner
- Department of Pulmonary Medicine, University Hospital Essen-Ruhrlandklinik, Adult Cystic Fibrosis Center, University of Duisburg-Essen, Essen, Germany
- Florian Stehling
- Pediatric Pulmonology and Sleep Medicine, Children's University Hospital Essen, University of Duisburg-Essen, Essen, Germany
- Folke Brinkmann
- Department of Pediatric Pneumology & Allergology, The University of Lübeck, University Medical Center Schleswig-Holstein, Campus Centrum Lübeck, Member of Airway Research Center North (ARCN) of the German Center of Lung Research (DZL), Lübeck, Germany
- Manuel Burkhart
- Mukoviszidose Institut gGmbH (MI), Bonn, Germany
- Helmut Ellemunter
- Medical University of Innsbruck, Cystic Fibrosis Centre Innsbruck, Innsbruck, Austria
- Anna-Maria Dittrich
- Department of Paediatric Pneumology, Allergology and Neonatology, Hannover Medical School, Hannover, Germany; Biomedical Research in Endstage and Obstructive Lung Disease Hannover (BREATH), Member of the German Center for Lung Research (DZL), Germany
- Christina Smaczny
- University Hospital Frankfurt/Main, Goethe University, Pneumology and Allergology, Christiane Herzog CF Center Frankfurt/Main, Frankfurt/Main, Germany
- Olaf Eickmeier
- Pediatric Allergology, Pulmonology & Cystic Fibrosis, Christiane Herzog CF Center- Frankfurt a.M., University Hospital Frankfurt a.M., Germany
- Matthias Kappler
- Department of Pediatrics, Dr. von Hauner Children's Hospital, University Hospital, LMU Munich, Germany
- Carsten Schwarz
- Division Cystic Fibrosis, HMU-Health and Medical University Potsdam, Clinic Westbrandenburg, Potsdam, Germany
- Sarah Sieber
- STAT-UP Statistical Consulting & Data Science GmbH, Munich, Germany
- Susanne Naehrig
- Department of Internal Medicine V, Cystic Fibrosis Center for Adults, University Hospital, Ludwig Maximilian University (LMU) Munich, Germany
- Lutz Naehrlich
- Department of Pediatrics, Justus-Liebig-University Giessen, Giessen, Germany; Universities of Giessen and Marburg Lung Center (UGMLC), German Center for Lung Research (DZL), Giessen, Germany
- Klaus Tenbrock
- Claus Pfannenstiel
- Dirk Steffen
- Jochen Meister
- Britta Welzenbach
- Anette Scharschinger
- Markus Kratz
- Maike Pincus
- Tobias Tenenbaum
- Mirjam Stahl
- Kerstin Landwehr
- Stefanie Dillenhöfer
- Hans Kössel
- Petra Kaiser
- Manfred Käding
- Simone Stolz
- Stefan Blaas
- Jutta Hammermann
- Monika Gappa
- Antje Schuster
- Dana Spittel
- Sabine Zirlik
- Sabina Schmitt
- Florian Stehling
- Sivagurunathan Sutharsan
- Joachim Bargon
- Malte Cremer
- Christina Smaczny
- Sebastian Fähndrich
- Andrea Heinzmann
- Lutz Nährlich
- Stefan Kuhnert
- Sebastian Schmidt
- Bettina Wollschläger
- Anna Nolde
- Inka Held
- Wolfgang Kamin
- Felix C. Ringshausen
- Anna-Maria Dittrich
- Sabine Wege
- Olaf Sommerburg
- Norbert Geier
- Sara Lisa Fleser
- Heinrike Wilkens
- Helmut Ellemunter
- Michael Lorenz
- Paul Vöhringer
- Martin Schebek
- Christian Timke
- Ingrid Bobis
- Thomas Nüßlein
- Doris Dieninghoff
- Ernst Rietschel
- Bastian Klinkhammer
- Freerk Prenzel
- Alexandra Wald
- Axel Kempa
- Folke Brinkmann
- Eva Lücke
- Ines Adams
- Krystyna Poplawska
- Simone Lehmkühler
- Monika Bauck
- Anne Pfülb
- Rainald Fischer
- Gudrun Schopper
- Susanne Nährig
- Matthias Griese
- Jörg Grosse
- Peter Küster
- Birte KinderHolger Köster
- Susanne Büsing
- Margarethe Pohl
- Carsten Schwarz
- Andreas Artlich
- Alexander Kiefer
- Manfred Ballmann
- Nikola Gjorgjevski
- Markus A. Rose
- Friederike Ruf
- Rolf Mahlberg
- Wolfgang Thomas
- Ute Graepler
- Sebastian Bode
- hilipp Meyn
- Josef Rosenecker
- Cordula Koerner
- Klaus-Michael Keller
- Tina Teßmer
- Helge Hebestreit
- Gerhild Lohse
- Journal volume & issue
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Vol. 32
p. 100690
Abstract
Summary: Background: Treatment with elexacaftor/tezacaftor/ivacaftor (ETI) improves multiple clinical outcomes in people with cystic fibrosis (pwCF) with at least one F508del allele. This study evaluated the real-world impact of ETI on lung function, nutritional status, pulmonary exacerbation frequency, and sweat chloride concentrations in a large group of pwCF. Methods: This observational cohort study used data from the German CF Registry for pwCF who received ETI therapy and were followed up for a period of 12 months. Findings: The study included 2645 pwCF from 67 centres in Germany (mean age 28.0 ± 11.5 years). Over the first year after ETI was initiated, percent predicted forced expiratory volume in 1 s (ppFEV1) increased by 11.3% (95% confidence interval [CI] 10.8–11.8, p < 0.0001), body mass index (BMI) z-score increased by 0.3 (95% CI 0.3–0.4, p < 0.0001) in individuals aged 12 to <18 years and BMI in adults increased by 1.4 kg/m2 (95% CI 1.3–1.4, p < 0.0001), pulmonary exacerbations decreased by 75.9% (p < 0.0001) and mean sweat chloride concentration decreased by 50.9 mmol/L (95% CI –52.6, −49.3, p < 0.0001). Improvements in ppFEV1 over the first year of therapy were greater in pwCF who had not previously received cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy (12.6% [95% CI 11.9–13.4] vs. 9.7% [95% CI 9.0–10.5] in those with prior CFTR modulator treatment. Interpretation: These real-world data are consistent with the findings of randomised clinical trials, and support the use of ETI as a highly effective treatment option for pwCF who have at least one F508del allele. Funding: None.