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Characterizing treatment-related patient needs in atopic dermatitis: Insights for personalized goal orientation

M. Augustin, A. Langenbruch, R. Reinert, C. Blome, M. Gutknecht, T. Werfel, S. Ständer, S. Steinke, N. Kirsten, R. Sommer (2019, June). 

24th World Congress of Dermatology 2019: ID5339

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

Perception of stigmatization of people with psoriasis – a qualitative analyses from patients perspective, their relatives and health care providers

R. Sommer, M. Augustin, U. Mrowietz, J. Topp, I. Schäfer, R. von Spreckelsen (2019, June). 

24th World Congress of Dermatology 2019: ID5200

Merkmale und Determinanten von Patientenbedarfen bei der Behandlung von chronisch spontaner Urtikaria

R. Sommer, A. Langenbruch, M. Maurer, P. Staubach, M. Augustin (2019, May).

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P307 

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

Krankheitsbelastung und Patientenbedarfe in Bezug auf sensible Körperregionen bei Patienten mit Psoriasis: Ergebnisse aus der Routineversorgung

R. Sommer, A. Langenbruch, A. Dankworth, M. Augustin (2019, May). 

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P306

Hautläsionen, Hautpflege und Eigenschaften von Juckreiz bei Patienten mit Urämie nach Hämodialyse

R. Sommer, S. Ständer, M. Augustin (2019, May). 

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P267

Quality of life profile in children/adolescents with chronic conditions: A meta-analysis with the KIDSCREEN questionnaires

N. da Silva, M. Pereira, C. Otto, U. Ravens-Sieberer, MC. Canavarro, M. Bullinger (2019, September). 

Oral communication presented at the 14. Kongress der Fachgruppe Gesundheitspsychologie: Gesundheitspsychologie - individualisiert, bevölkerungsbezogen und versorgungsrelevant?, Greifswald, Germany.

Disease burden and patient needs in emerging adults and adults with psoriasis: Addressing developmental specificities for person-centered healthcare.

N. da Silva, M. Augustin, A. Langenbruch, A. Dankworth, R. Sommer (2019, October).

Oral communication presented at the 18. Deutscher Kongress für Versorgungsforschung (DKVF): Gemeinsam Verantwortung übernehmen für ein lernendes Gesundheitssystem, Berlin, Germany.

DOI:
10.13140/RG.2.2.12807.14247

Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment

J. Bloemeke1, N. Silva2,3, M. Bullinger2, S. Witt2, H-G. Dörr4, J. Quitmann2

1Center for Psychosocial Medicine, Institute for Medical Psychology, University Medical Center Hamburg-Eppendorf in Hamburg, Hamburg, Germany. j.bloemeke@uke.de

2Center for Psychosocial Medicine, Institute for Medical Psychology, University Medical Center Hamburg-Eppendorf in Hamburg, Hamburg, Germany

3Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal

4Clinic for Children and Adolescents, University Hospital Erlangen-Nurnberg, Erlangen, Germany

Health Qual Life Out. 2019;17:49

 

The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. This study evaluates the psychometric properties of the QoLISSY questionnaire within a German prospective trial of short statured children treated with human growth hormone (hGH).

PMID:
30885197
DOI:
10.1186/s12955-019-1118-9
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