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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

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 

Characteristics and determinants of patient burden and needs in the treatment of chronic spontaneous urticarial

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

24th World Congress of Dermatology 2019: ID5210

Cumulative Life Course Impairment (CLCI): ein Konstrukt zur Unterstützung der personenzentrierten Gesundheitsversorgung bei chronischen Hautkrankheiten

R. Sommer, M. Augustin (2019, May). 

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P294

Charakterisierung der behandlungsbezogenen Patientenbedürfnisse bei Neurodermitis: Einblicke in eine personenzentrierte Zielorientierung

M. Augustin, A. Langenbruch, R. Reinert, C. Blome, M. Gutknecht, T. Werfel, S. Ständer, JT. Maul, S. Steinke, N. Kirsten, N. da Silva, R. Sommer (2019, May).

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P296

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

Ökonomie der Wundversorgung in Dissemond

M. Augustin, R. Sommer 

J, Kröger K (Hrsg) Chronische Wunden – Diagnostik, Therapie, Versorgung, 2019, 1. Auflage.

Entwicklung und Umsetzung des BMG-Förderprojektes zur "Entstigmatisierung" bei Menschen mit sichtbaren chronischen Hautkrankheiten auf Basis des WHO-Berichts zu Psoriasis

R. Sommer, U. Mrowietz, C. Luck-Sikorski, R. von Kiedrowski, S. Schlette, M. Radtke, SM. John , A. Zink, N. Suthakharan, D. Wilsmann-Theis, M. Augustin (2019, May).

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P312

Differences between patient- and proxy-reported HRQoL using the Wound-QoL

R. Sommer, Dr. Rer. Biol. Hum.1 ; C. Hampel-Kalthoff2; B. Kalthoff2; C. Neht, MSc1; E. Scherfer2; M. Winkler, Dr.2, C. Blome, Dr. Phil.1

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

2ORGAMed Dortmund GmbH, Dortmund, Germany

Wound Repair Regen. 2018 May;26(3):293-296

 

The purpose of this study was to examine the patient- and proxy-report agreement on the Wound-quality of life (QoL) questionnaire to assess health-related QoL in patients with chronic wounds.

PMID:
Epub 2018 Oct 11. 30118159
DOI:
10.1111/wrr.12662

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 , Zink A, N. Suthakaran, R. Sommer (2018, October). 

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

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