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Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia

J. Bloemeke1, R. Sommer2, S. Witt3, M Bullinger3, C. Nordon4, F. J. Badia4, F. Luna González5, A. Leiva-Gea5, F. de Borja Delgado Rufino5, F. Mayoral-Cleries6, P. Romero-Sanchiz6,7,8, V. Clamagirand Saiz6, R. Nogueira-Arjona8, K. Mohnike9, J. Quitmann3

1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 | W 26, 20246, Hamburg, Germany. j.bloemeke@uke.de

2Center for Psychosocial Medicine, Institute of Health Care Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany

3Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 | W 26, 20246, Hamburg, Germany

4LASER Analytica, Tour CIT 3 rue de l'arrivée, 75015, Paris, France

5Unidad de Cirugía Ortopédica y Traumatología, Hospital Universitario Virgen de la Victoria Málaga, Málaga, Spain

6Unidad de Salud Mental, Hospital Universitario Regional de Málaga, Instituto de Investigación Biomédica de Málaga (IBIMA), Málaga, Spain

7Departamento de Personalidad, Evaluación y Tratamientos Psicológicos, Universidad de Málaga, Málaga, Spain

8Department of Psychology and Neuroscience, Dalhousie University, Halifax, Canada

9University Children's Clinic, Otto von Geuricke University in Magdeburg, Magdeburg, Germany

Qual Life Res. 2019 Sep;28(9):2553-2563

 

Achondroplasia, as the most common form of disproportionate short stature, potentially impacts the health-related quality of life (HRQOL) and functioning of people with this condition. Because there are no psychometrically validated patient-reported outcome (PRO) condition-specific instruments for achondroplasia, this study selected and tested available generic, disease-specific and under development questionnaires for possible use in multinational clinical research.

PMID:
Epub 2019 May 15. 31093848
DOI:
10.1007/s11136-019-02210-z

Gender and age significantly determine patient needs and treatment goals in psoriasis - a lesson for practice

J-T. Maul1, A. A. Navarini1, R. Sommer2, F. Anzengruber1, C. Sorbe2, U. Mrowietz3, M. Drach1, C. Blome2, W-H. Boehncke4,5, D. Thaci6, K. Reich7, R. von Kiedrowski8, A. Körber9, N. Yawalkar10, C. Mainetti11, E. Laffitte4, M. Streit12, S. Rustenbach2, C. Conrad13, L. Borradori10, M. Gilliet13, A. Cozzio14, P. Itin15, P. Häusermann15, L. E. French1, M. A. Radtke2, M. Augustin2

1Department of Dermatology, University Hospital Zurich, Zurich, Switzerland

2Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

3Department of Dermatology, University Medical Center Schleswig-Holstein, Kiel, Germany

4Department of Dermatology and Venereology, Geneva University Hospitals, Geneva, Switzerland

5Department of Pathology and Immunology, Geneva University Hospitals, Geneva, Switzerland

6Comprehensive Center for Inflammation Medicine, University Hospital Schleswig-Holstein, Lübeck, Germany

7Dermatologikum Berlin and SCIderm Research Institute, Hamburg, Germany

8Dermatology Practice and CMS3, Selters, Germany

9Dermatology Practice Essen, Essen, Germany

10Department of Dermatology, Inselspital, University Hospital Bern, University of Bern, Bern, Switzerland

11Department of Dermatology, Regional Hospital Bellinzona, Bellinzona, Switzerland

12Department of Dermatology, Cantonal Hospital Aarau, Aarau, Switzerland

13Department of Dermatology, University Hospital Lausanne, Lausanne, Switzerland

14Department of Dermatology, Cantonal Hospital St. Gallen, St. Gallen, Switzerland

15Department of Dermatology, University Hospital Basel, Basel, Switzerland

J Eur Acad Dermatol Venereol. 2019 Apr;33(4):700-708

 

Though patient needs are key drivers of treatment decisions, they are rarely systematically investigated in routine care.

Objective: This study aimed at analysing needs and expectations from the patient perspective in the German and Swiss psoriasis registries PsoBest and Swiss Dermatology Network of Targeted Therapies (SDNTT) with respect to treatment choice, age and gender.

PMID:
Epub 2019 Jan 15. 30388318
DOI:
10.1111/jdv.15324

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 

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