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Erwachsene mit Mukoviszidose

Es geht um mehr als die Lebensdauer

Adults with cystic fibrosis

It’s not just about longevity

  • Leitthema
  • Published:
Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz Aims and scope

Zusammenfassung

Wie bei kaum einem anderen Krankheitsbild konnte bei der Mukoviszidose (CF) durch medizinische Fortschritte und eine in den Lebensalltag der Betroffenen integrierte Dauertherapie eine beachtliche Verbesserung der Lebenszeit erreicht werden. Die einst als tödliche Krankheit des Kindesalters bekannte CF ist längst in der Erwachsenenmedizin angekommen: Seit 2009 sind Erwachsene mit CF im deutschen CF-Register erstmals in der Mehrheit. Die Schattenseite sind einerseits Spätkomplikationen (zum Beispiel Diabetes, Osteoporose), die man früher wegen des frühen Versterbens der Patienten wenig kannte. Zunehmend bedeutsam werden schädliche Auswirkungen der inzwischen über Jahrzehnte reichenden Therapien. Diese Therapiefolgen müssen ebenso wie die kontinuierlich gestiegene Therapiebelastung der Patienten und ihrer Angehörigen zukünftig sorgfältiger gegen den erhofften Behandlungsgewinn abgewogen werden. Dass nicht das reine Überleben, sondern das subjektiv lohnende Leben Ziel der medizinischen Bemühungen sein muss, hat in der CF-Medizin eine lange Tradition. Hier stellt die spektakuläre Verbesserung der Überlebenszeit eine enorme psychosoziale Herausforderung dar. Die verfügbaren Daten sprechen dafür, dass die Mehrzahl der Betroffenen trotz progredient schlechterer Gesundheit um jeden Zentimeter Normalität ringt.

Abstract

Cystic fibrosis (CF) is one example of serious disorders for which medical progress and the integration of chronic treatment into the patients’ daily routines have led to markedly better longevity. Formerly known as a ‘killer disease’ of childhood, CF is now considered a disorder with childhood onset, but is well known in adult medicine. Since 2009, for the first time CF adults have made up the majority of patients in the German CF registry. The drawbacks of improved longevity are long-term complications (e.g., CFRD, osteoporosis) that were rarely seen before. In particular, unwanted effects of treatments that today are performed for decades rather than years are becoming pressing problems. Unwanted effects as well as the ever-increasing treatment burden must be carefully weighed against the expected benefits of treatment. However, CF medicine has always been aware that it is not just about longevity, but that prolonged life has to have meaning. Therefore, the marked increase in longevity is also a psychosocial challenge. So far, empirical data suggest that the majority of people with CF courageously struggle for a normal life.

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Interessenkonflikt

Der korrespondierende Autor weist für sich und seine Koautoren auf folgende Beziehungen hin: Prof. Dr. von der Hardt gibt an, dass kein Interessenkonflikt besteht. Dr. Schwarz ist als Referent für folgende Firmen tätig: Gilead Sciences GmbH, Novartis Pharma GmbH und Olympus. Dr. Ullrich hat von folgenden Firmen und Verbänden Honorare für Referententätigkeit oder ein Sponsoring für Druckerzeugnisse erhalten: Activaero GmbH, Axcan GmbH, Chiesi GmbH, Gilead Sciences GmbH, Mukoviszidose e.V., Novartis Pharma GmbH, Roche Pharma AG und Solvay/Abbott GmbH.

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Authors and Affiliations

  1. ehem. Medizinische Hochschule Hannover, Hannover, Deutschland

    H. von der Hardt

  2. Christiane Herzog-Zentrum/Mukoviszidose, Charité - Universitätsmedizin Berlin, Berlin, Deutschland

    C. Schwarz

  3. Psychotherapeutische Praxis Schwerin, Lindenstr. 7, 19055, Schwerin, Deutschland

    G. Ullrich

Authors
  1. H. von der Hardt
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  2. C. Schwarz
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  3. G. Ullrich
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Correspondence to G. Ullrich.

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von der Hardt, H., Schwarz, C. & Ullrich, G. Erwachsene mit Mukoviszidose. Bundesgesundheitsbl. 55, 558–567 (2012). https://doi.org/10.1007/s00103-012-1460-0

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  • DOI: https://doi.org/10.1007/s00103-012-1460-0

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