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2019

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

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

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

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

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

Stigmatisierungserleben bei Psoriasis – qualitative Analyse aus Sicht von Betroffenen, Angehörigen und Versorgern [Perception of stigmatization in people with psoriasis-qualitative analysis from the perspective of patients, relatives and healthcare professionals]

R Sommer1, M Augustin2, U Mrowietz3, J Topp2, I Schäfer2, R von Spreckelsen4

1Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen (IVDP), Universitätsklinikum Hamburg-Eppendorf (UKE), Martinistr. 52, 20246, Hamburg, Deutschland. r.sommer@uke.de

2Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen (IVDP), Universitätsklinikum Hamburg-Eppendorf (UKE), Martinistr. 52, 20246, Hamburg, Deutschland

3Klinik für Dermatologie, Allergologie und Venerologie, Universitätsklinikum Schleswig-Holstein (UKSH), Campus Kiel, Kiel, Deutschland

4Klinik für Psychotherapie und Psychosomatik, Universitätsklinikum Schleswig-Holstein (UKSH), Campus Kiel, Kiel, Deutschland

Hautarzt. 2019 Jul;70(7):520-526

 

Background: Numerous studies have shown that psoriasis is associated with severe losses in almost all dimensions of health-related quality of life. An important aspect is the stigmatization experience of those affected.

Objective: The aim of this study was to examine the perception of stigmatization from the perspective of patients, relatives and healthcare professionals using a qualitative approach.

PMID:
31134287
DOI:
10.1007/s00105-019-4411

Strategies to reduce stigma related to visible chronic skin diseases: a systematic review

J Topp1, V Andrees1, N A Weinberger2, I Schäfer1, R Sommer1, U Mrowietz3, C Luck-Sikorski2, M Augustin1

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

2SRH University of Applied Health Science, Gera, Germany

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

J Eur Acad Dermatol Venereol. 2019 Nov;33(11):2029-2038

 

Many patients with a visible chronic skin disease experience discrimination and stigmatization. This results in psychosocial impairments in addition to the burden of disease and emphasizes the urgency to implement effective stigma-reduction strategies. To synthesize what is known globally about effective interventions to reduce stigma associated with visible chronic skin diseases, a systematic review was conducted. Four electronic databases were searched until May 2018. Studies evaluating interventions to reduce stigmatization in patients with visible chronic skin diseases and applying at least one stigma-related outcome measure were included. Data were extracted on study design, country, study population, outcome measures and main findings. Results were subsequently synthesized in a narrative review. Critical Appraisal Skills Programme tools were used to assess study quality. Nineteen studies were included in the review. Study design was very heterogeneous and study quality rather poor. Thirteen studies addresses patients with leprosy in low- and middle-income countries, and one study each targeted patients with onychomycosis, leg ulcer, facial disfigurement, atopic dermatitis, vitiligo and alopecia. Evaluated interventions were mainly multi-faceted incorporating more than one type of intervention. While 10 studies focused on the reduction in self-stigma and 4 on the reduction in public stigma, another 5 studies aimed at reducing both. The present review revealed a lack of high-quality studies on effective approaches to reduce stigmatization of patients with visible chronic skin diseases. Development and evaluation of intervention formats to adequately address stigma is essential to promote patients' health and well-being.

PMID:
Epub 2019 Aug 5. 31177601
DOI:
10.1111/jdv.15734

Topology of psoriasis in routine care: results from high-resolution analysis of 2009 patients

M Augustin1, R Sommer1, N Kirsten1, A Danckworth1, M A Radtke1, K Reich2, D Thaci3, W H Boehncke4, A Langenbruch1, U Mrowietz5

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

2Dermatologikum Berlin and SCIderm Research Institute, Hamburg, Germany

3Comprehensive Center for Inflammation Medicine, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany

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

5Department of Dermatology, University Medical Center Schleswig-Holstein, Campus Kiel, Kiel, Germany

Br J Dermatol. 2019 Aug;181(2):358-365

 

Different phenotypes have been described in psoriasis. Few details are known about the topology of patients in routine care.

Objectives: To characterize the frequency and distribution of body sites affected by psoriasis in Germany.

PMID:
Epub 2019 Jan 24.30430557
DOI:
10.1111/bjd.17403

Epidemiology and dermatological comorbidity of seborrhoeic dermatitis: population-based study in 161 269 employees

N Zander1, R Sommer1, I Schäfer1, R Reinert1, N Kirsten1, B-C Zyriax1, J-T Maul2, M Augustin1

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

2Department of Dermatology, University Hospital of Zurich, Zurich, Switzerland

Br J Dermatol. 2019 Oct;181(4):743-748

 

Seborrhoeic dermatitis is a common but epidemiologically poorly researched chronic skin disease.

Objectives: To characterize the prevalence and dermatological comorbidity of seborrhoeic dermatitis in Germany.

PMID:
Epub 2019 Jul 17. 30802934
DOI:
10.1111/bjd.17826

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
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