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Keeping a PRO instrument alive – The international pediatric DISABKIDS initiative

M. Bullinger, J. Chaplin, H. Mühlan, S. Schmidt, N. da Silva (2019, October). 

Poster session presented at the ISOQOL 26th Annual Conference, San Diego, California, USA.

DOI:
10.13140/RG.2.2.10709.99047

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

N. da Silva, M. Augustin, A. Langenbruch, U. Mrowietz, D. Thaci, HW. Boehncke, R. Sommer (2019, October). 

E-poster presented at the 28th European Academy of Dermatology and Venereology (EADV) Congress, Madrid, Spain. 

DOI:
10.13140/RG.2.2.35980.67206

Topology of psoriasis in sexually sensitive and visible body areas: Disease burden and patient needs in routine care

N. da Silva, M. Augustin, A. Langenbruch, U. Mrowietz, D. Thaci, HW. Boehncke, R. Sommer (2019, October). 
 

E-poster presented at the 28th European Academy of Dermatology and Venereology (EADV) Congress, Madrid, Spain.

DOI:
10.13140/RG.2.2.12492.56962

People-centered Health Care (PCHC): A new concept for characterizing comprehensive, effective care in dermatology

R. Sommer, M. Augustin (2019, October)

28th European Academy of Dermatology and Venereology Congress 2019: P0918

Health-related quality of life experiences in children and adolescents born with esophageal atresia: A Swedish-German focus group study

S. Witt1, M. Dellenmark-Blom2, S.Flieder3, J. Dingemann3, K. Abrahamsson2,4, L. Jönsson2, V. Gatzinsky2, J.E. Chaplin4, B. Ure3, C. Dingemann3, M. Bullinger1, R. Sommer1,5, J.H. Quitmann1

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

2Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden

3Department of Pediatric Surgery, Hannover Medical School, Auf der Bult Children's Hospital, Hannover, Germany.

4Institute of Clinical Sciences, Department of Pediatrics, Gothenburg University, The Queen Silvia Children's Hospital, Gothenburg, Sweden

5Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

Child Care Health Dev. 2019 Jan;45(1):79-88

 

Esophageal atresia (EA) is a rare malformation of the esophagus, which needs surgical treatment. Survival rates have reached 95%, but esophageal and respiratory morbidity during childhood is frequent. Child and parent perspectives and cultural and age-specific approaches are fundamental in understanding children's health-related quality of life (HRQoL) and when developing a pediatric HRQoL questionnaire. We aimed to increase the conceptual and cross-cultural understanding of condition-specific HRQoL experiences among EA children from Sweden and Germany and investigate content validity for an EA-specific HRQoL questionnaire.

PMID:
Epub 2018 Sep 16. 30221367
DOI:
10.1111/cch.12619

Patient needs and treatment goals in atopic eczema: Insights for patient-centered routine care

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

28th European Academy of Dermatology and Venereology Congress 2019: P0252

Cumulative life course impairment CLCI - a concept supporting people-centered care in dermatology

M. Augustin, R. Sommer (2019, October). 

28th European Academy of Dermatology and Venereology Congress 2019: P1860

Perception and predictors of prejudice in people with psoriasis in the German population

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

24th World Congress of Dermatology 2019: ID5233 

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

Disease burden related to sensitive body areas in patients with psoriasis: Results from large-scale studies in routine care

R. Sommer, A. Langenbruch, A. Danckworth, M. Augustin (2019, June).

24th World Congress of Dermatology 2019: ID5583 

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