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Maßnahmen zum Abbau von Stigmatisierung und Ausgrenzung von Menschen mit chronischen Hauterkrankungen: Ergebnisse einer Pilot-Intervention bei Jugendlichen

R. Sommer, T. Bock, M. Augustin (2019, May). 

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P317

Piloting and psychometric properties of a patient-reported outcome instrument for young people with achondroplasia based on the International Classification of Functioning Disability and Health: the Achondroplasia Personal Life Experience Scale (APLES)

J. Bloemeke1, R. Sommer1, S. Witt1, M. Dabs1, F.J.Badia2, M. Bullinger1, J. Quitmann1

1Department of Medical Psychology , Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf , Hamburg , Germany

2Omakase Consulting , Barcelona , Spain

Disabil Rehabil. 2019 Jul;41(15):1815-1825

 

This study describes the psychometric testing of the Achondroplasia Personal Life Experience Scale (APLES): a new disease- and functioning-specific health-related quality of life instrument for young people with achondroplasia, which was developed based on the International Classification of Functioning-Children and Youth Version. 

PMID:
Epub 2018 Mar 8. 29516753
DOI:
10.1080/09638288.2018.1447028
PubMed

Same language, different culture: Differential item functioning and factor structure of the DISABKIDS-37 questionnaire in Portuguese and Brazilian children/adolescents with asthma and diabetes

N. da Silva, CB. dos Santos, C. Carona, S. Nunes, H. Moreira, C. Fegadolli, MC. Canavarro, M. Bullinger (2018, October). 

Poster session presented at the ISOQOL 25th Annual Conference, Dublin, Ireland. 

DOI:
10.13140/RG.2.2.22985.19046

Sex-related impairments and patient needs in ano-genital psoriasis: Difficult to communicate topics and their impact on patient-centred care

N. da Silva, M. Augustin, A. Langenbruch, U. Mrowietz, K. Reich, D. Thaçi, W-H. Boehncke, N. Kirsten, A. Danckworth, R. Sommer (2019, October). 

Press briefing at the 28th European Academy of Dermatology and Venereology (EADV) Congress, Madrid, Spain.

Translating the WHA resolution in a member state: towards a German programme on 'Destigmatization' for individuals with visible chronic skin diseases

M. Augustin1, U. Mrowietz2, C. Luck-Sikorski3,4, R. von Kiedrowski5, S. Schlette6, M.A. Radtke1, S.M. John7, A. Zink8, N. Suthakharan1, R. Sommer1, for the German ECHT research group

1Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

2Department of Dermatology, Venereology and Allergology, Psoriasis-Center, University Medical Center Schleswig-Holstein, Kiel, Germany

3SRH University of Applied Health Sciences Gera, Gera, Germany

4Integrated Research and Treatment Center (IFB) Adiposity Diseases, University Hospital Leipzig, Leipzig, Germany

5Dermatological Practice Selters, Selters, Germany

6Professional Association of German Dermatologists (BVDD), Berlin, Germany

7Department of Dermatology, Environmental Medicine, Health Theory, Institute for Interdisciplinary Dermatological Prevention and Rehabilitation (iDerm), University of Osnabrueck, Osnabrueck, Germany

8Department of Dermatology and Allergology, Technical University of Munich, Munich, Germany

J Eur Acad Dermatol Venereol. 2019 Nov;33(11):2202-2208

 

Even today, a substantial number of individuals with visible skin diseases still suffer from incomprehension and stigmatization. About 10 million people are affected by such diseases in Germany. The WHO strongly urges member states to take measures against stigmatization in skin diseases.

PMID:
Epub 2019 Jul 8. 31087405
DOI:
10.1111/jdv.15682

Identifying specific patient needs and treatment goals in chronic spontaneous urticaria for a patient-centered clinical decision-making process.

R. Sommer, M. Augustin, A. Langenbruch, M. Maurer, P. Staubach, N. da Silva (2019, October). 

28th European Academy of Dermatology and Venereology Congress 2019 (Oral presentation): FC07.08

Factors influencing health related quality of lfe in children/adolescents with growth hormone deficiency

C. Drosatou, E-A. Vlachopapadopoulou, M. Bullinger, J. Quitmann, N. da Silva, S. Michalacos, K. Tsoumakas (2018, September)

Poster session presented at the 57th Annual Meeting of the European Society of Paediatric Endocrinology (ESPE), Athens, Greece.

Cross-cultural comparison of pediatric asthma-related quality of life between Portugal and other European countries: Measurement invariance and differential item functioning of the DISABKIDS Asthma Module

N. da Silva, C. Carona, MC. Canavarro, M. Bullinger (2018, September). 

Poster session presented at the European Pediatric Psychology Conference 2018, Ghent, Belgium.

DOI:
10.13140/RG.2.2.34135.32168

Umsetzung der WHO Psoriasis - Resolution in die Öffentlichkeit: ein bundesweites Programm gegen Stigmatisierung bei chronisch sichtbaren Hauterkrankungen

 M. Augustin, U. Mrowietz, C. Luck-Sikorski, R. von Kiedrowski, S. Schlette, M. Radtke, SM. John, A. Zink, N. Suthakaran, R. Sommer (2018, October). 

17. Deutscher Kongress für Versorgungsforschung 2018: P230

Translating the WHO psoriasis resolution into the public: the German federal program against stigmatization 2018-2020

M. Augustin, U. Mrowietz, C. Luck-Sikorski, R. von Kiedrowski, S. Schlette, M. Radtke, SM. John, A. Zink, N. Suthakaran, R. Sommer (2018, October). 

Annual Conference of the International Society for Quality of Life Research 2018: ID2044

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