Literature DB >> 30229366

[Cystic fibrosis : A new disease pattern in adult medicine].

D Staab1, C Schwarz2.   

Abstract

Cystic fibrosis (CF) is an inherited incurable multi-organ disease. Improvement in treatment approaches over the last 20 years have led to an increased life expectancy where the number of adult patients has doubled and will continue to increase exponentially. Due to the use of new substances which modulate the basic defect, a substantial improvement in the prognosis can be assumed but the existing healthcare structures in Germany do not meet these rising needs. With more than 50% of patients being adults, there are only very few internal medicine centers available. Only approximately one third of the patients are treated in adult health centers. Adolescence in particular is a very vulnerable phase of the disease, the risk of comorbidities is increased and adherence to the very laborious treatment recommendations is as a rule low. While in many other countries transition programs have been evaluated and implemented for more than 20 years, in Germany there have only been rudimentary approaches to transition. Meanwhile investigations are available on the perceptions of adolescents with respect to coping with the disease and their treatment needs, including the perception of the time when the transition process should begin. Successful transition seems to be performed best in combined pediatric and adult centers, with the back-up of an experienced multidisciplinary team of healthcare providers.

Entities:  

Keywords:  Adolescence; Attitude to disease; Benchmarking; Demography; Transition to adult care

Mesh:

Year:  2018        PMID: 30229366     DOI: 10.1007/s00108-018-0498-y

Source DB:  PubMed          Journal:  Internist (Berl)        ISSN: 0020-9554            Impact factor:   0.743


  18 in total

1.  Transition programs in cystic fibrosis centers.

Authors:  Steven P Conway
Journal:  Pediatr Pulmonol       Date:  2004-01

2.  Demographic transition of the Swedish cystic fibrosis community--results of modern care.

Authors:  L Lannefors; A Lindgren
Journal:  Respir Med       Date:  2002-09       Impact factor: 3.415

3.  Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views.

Authors:  M P Boyle; Z Farukhi; M L Nosky
Journal:  Pediatr Pulmonol       Date:  2001-12

Review 4.  [Cystic fibrosis care in transition from adolescence to adult age].

Authors:  R Fischer; S Nährig; M Kappler; M Griese
Journal:  Internist (Berl)       Date:  2009-10       Impact factor: 0.743

5.  [Cost analysis for ambulatory treatment of cystic fibrosis patients in Germany. Overview of the prospective study results].

Authors:  Daniela Eidt; Thomas Mittendorf; Thomas O F Wagner; Andreas Reimann; J-Matthias Graf von der Schulenburg
Journal:  Med Klin (Munich)       Date:  2009-07-18

6.  A multicenter prospective quasi-experimental study on the impact of a transition-oriented generic patient education program on health service participation and quality of life in adolescents and young adults.

Authors:  Silke Schmidt; Carsten Herrmann-Garitz; Franziska Bomba; Ute Thyen
Journal:  Patient Educ Couns       Date:  2015-11-03

7.  Transition programs in cystic fibrosis centers: perceptions of team members.

Authors:  Patrick A Flume; Lloyd A Taylor; Deborah L Anderson; Sue Gray; David Turner
Journal:  Pediatr Pulmonol       Date:  2004-01

8.  Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis.

Authors:  J Stuart Elborn; Scott C Bell; Susan L Madge; Pierre-Regis Burgel; Carlo Castellani; Steven Conway; Karleen De Rijcke; Birgit Dembski; Pavel Drevinek; Harry G M Heijerman; J Alistair Innes; Anders Lindblad; Bruce Marshall; Hanne V Olesen; Andreas L Reimann; Ampara Solé; Laura Viviani; Thomas O F Wagner; Tobias Welte; Francesco Blasi
Journal:  Eur Respir J       Date:  2015-10-09       Impact factor: 16.671

9.  Medication adherence among adolescent solid-organ transplant recipients: A survey of healthcare providers.

Authors:  Pooja Mehta; Elizabeth A Steinberg; Sarah L Kelly; Cindy Buchanan; Alana Resmini Rawlinson
Journal:  Pediatr Transplant       Date:  2017-07-02

10.  Barriers to adherence in adolescents and young adults with cystic fibrosis: a questionnaire study in young patients and their parents.

Authors:  Vibeke Bregnballe; Peter Oluf Schiøtz; Kirsten A Boisen; Tacjana Pressler; Mikael Thastum
Journal:  Patient Prefer Adherence       Date:  2011-10-11       Impact factor: 2.711

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  1 in total

1.  Hearing the Voice of a Shadow Child: Healthy Siblings Experience of Cystic Fibrosis and Other Life-Threatening Conditions.

Authors:  Andrew Cox; Colin Pritchard
Journal:  J Patient Exp       Date:  2020-08-14
  1 in total

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