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European idiopathic pulmonary fibrosis Patient Charter: a missed opportunity

Andrew Bush, Angelo Barbato, Annick Clement, Steve Cunningham, Jacques de Blic, Carlee Gilbert, Lutz Goldbeck, Nural Kiper, Nicolaus Schwerk, Matthias Griese
European Respiratory Journal 2016 48: 282-283; DOI: 10.1183/13993003.00505-2016
Andrew Bush
1Respiratory Paediatrics, National Heart & Lung Institute, Imperial College London, London, UK
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  • For correspondence: a.bush@imperial.ac.uk
Angelo Barbato
2Woman and Child Health, University of Padova, Padova, Italy
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Annick Clement
3Pediatric Pulmunology, AP-HP Hôpital Trousseau, Paris, France
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Steve Cunningham
4Dept of Respiratory and Sleep Medicine, Royal Hospital for Sick Children, Edinburgh, UK
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Jacques de Blic
5Pneumologie Pédiatrique, Hôpital Necker Enfants Malades, Paris, France
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Carlee Gilbert
6UK chILD Foundation, Liverpool, UK
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Lutz Goldbeck
7Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Ulm, Germany
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Nural Kiper
8Dept of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, Turkey
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Nicolaus Schwerk
9Pediatrics, Hannover Medical School, Hannover, Germany
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Matthias Griese
10Pneumology, University of Munich, Dr. von Haunersches Kinderspital, Munich, Germany
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Abstract

Children with ILD should also have been included in the IPF European Charter http://ow.ly/ZBfA0

To the Editor:

The European charter for idiopathic pulmonary fibrosis is a welcome document [1], highlighting unmet needs in patients which will inform policy makers across Europe. However, it is sad that an important opportunity to involve children with interstitial lung diseases (ILDs) has been missed. There is a current pan-European paediatric ILD consortium [2] which could have been used to access these children and families. Our own work also highlighted similar themes [3]: diagnostic delay, the need for improved holistic care and written information, and also interestingly highlighted a previously undescribed issue, the high prevalence of feeding disorders in these children. So the European Charter, excellent as it is, sadly represents a lost opportunity to represent the needs of children with rare lung diseases to health commissioners.

Footnotes

  • Support statement: Funding information for this article has been deposited with FundRef.

  • Conflict of interest: None declared.

  • Received March 10, 2016.
  • Accepted March 13, 2016.
  • Copyright ©ERS 2016

References

  1. ↵
    1. Bonella F,
    2. Wijsenbeek M,
    3. Molina-Molina M, et al.
    European IPF Patient Charter: unmet needs and a call to action for healthcare policymakers. Eur Respir J 2016; 47: 597–606.
    OpenUrlAbstract/FREE Full Text
  2. ↵
    1. Bush A,
    2. Anthony G,
    3. Barbato A, et al.
    Research in progress: put the orphanage out of business. Thorax 2013; 68: 971–973.
    OpenUrlAbstract/FREE Full Text
  3. ↵
    1. Gilbert C,
    2. Bush A,
    3. Cunningham S
    . Childhood interstitial lung disease: family experiences. Pediatr Pulmonol 2015; 50: 1301–1303.
    OpenUrlCrossRefPubMed
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European idiopathic pulmonary fibrosis Patient Charter: a missed opportunity
Andrew Bush, Angelo Barbato, Annick Clement, Steve Cunningham, Jacques de Blic, Carlee Gilbert, Lutz Goldbeck, Nural Kiper, Nicolaus Schwerk, Matthias Griese
European Respiratory Journal Jul 2016, 48 (1) 282-283; DOI: 10.1183/13993003.00505-2016

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European idiopathic pulmonary fibrosis Patient Charter: a missed opportunity
Andrew Bush, Angelo Barbato, Annick Clement, Steve Cunningham, Jacques de Blic, Carlee Gilbert, Lutz Goldbeck, Nural Kiper, Nicolaus Schwerk, Matthias Griese
European Respiratory Journal Jul 2016, 48 (1) 282-283; DOI: 10.1183/13993003.00505-2016
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