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2021

Significance of chronic pruritus for intrapersonal burden and interpersonal experiences of stigmatization and sexuality in patients with psoriasis

R. Sommer1, M. Augustin1, C. Hilbring1, S. Ständer2, M. Hubo3, H.J. Hutt3, C.C. von Stülpnagel1, N. da Silva1

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

2Kompetenzzentrum Chronischer Pruritus, Universita ̈tsklinikum Mu ̈nster (UKM), Mu ̈nster, Germany

3LEO Pharma GmbH, Neu-Isenburg, Germany

J Eur Acad Dermatol Venereol. 2021 Jul;35(7):1553-1561

 

60–90% of patients with psoriasis suffer from pruritus and 65% report itching as one of the most burden- some symptoms, raising significant quality of life (QoL) impairments. However, pruritus is not only an intrapersonal symptom but also a psychosocial interactive phenomenon and little is known about the effects of itching on interpersonal experiences.

Objectives: This study aimed to compare the disease burden and patient needs between patients with none/mild vs. moderate/severe pruritus, and to examine the impact of disease parameters and intrapersonal burden on perceived stigmatization and sexual relationships.

Validation of the Spanish Wound-QoL Questionnaire.

E. Conde Montero1, 2, 3, R. Sommer3,M. Augustin3C. Blome3, R. Cabeza Martínez4, C. Horcajada Reales5, M. Alsina Gibert6, R. Ramón Sapena7, A. Peral Vázquez1, 2, J. Montoro López1, 2, S. Guisado Mun ̃oz1, 2, L. Pérez Jerónimo1, 2, P. de la Cueva Dobao1, 2, N. Kressel3, N. Mohr3

1Servicio de Dermatología, Hospital Universitario Infanta Leonor, Madrid, Spain

2Centro de Especialidades Vicente Soldevilla, Hospital Virgen de la Torre, Madrid, Spain

3German 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

4Servicio de Dermatología, Hospital Universitario Puerta de Hierro-Majadahonda (HUPHM), Madrid, Spain

5Servicio de Dermatología, Hospital Universitario de Fuenlabrada, Madrid, Spain

6Servicio de Dermatología, Hospital Clinic de Barcelona, Barcelona, Spain

7Servicio de Dermatología, Hospital General Universitario de Alicante, Alicante, Spain

Actas Dermosifiliogr (Engl Ed). 2021 Jan;112(1):44-51

 

Background and aims: The Wound-QoL is a validated and feasible questionnaire for measuring disease-specific health-related quality of life in chronic wounds, originally developed for use in German.

The objective of this study was to translate the Wound-QoL for use in clinical care and in clinical trials in Spain and to validate this version.

Mapping risk factors for cumulative life course impairment in patients with chronic skin diseases - a systematic review

C.C. von Stülpnagel, M. Augustin, L. Düpmann, N. da Silva , R. Sommer

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

 J Eur Acad Dermatol Venereol. 2021 Nov;35(11):2166-2184

 

Patients with chronic skin diseases suffer from physical and psychosocial impairments which can lead to a cumulative life-long burden. Therefore, the concept of cumulative life course impairment (CLCI) was introduced, referring to the non- reversible damage due to the persistent life-long burden. This systematic review (PROSPERO registry number: CRD42020179141) aimed at mapping the risk factors and the associated burden over time in patients with psoriasis, ato- pic dermatitis (AD) and hidradenitis suppurativa (HS).

Assessing the quality of life of people with chronic wounds by using the cross-culturally valid and revised Wound-QoL questionnaire

C.C. von Stülpnagel1, N. da Silva1, M. Augustin1, C. van Montfrans2, C. Fife3,4, A-M. Fagerdahl5, A. Gamus6, T. M. Klein1, C. Blome1, R. Sommer1

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

2Department of Dermatology, Erasmus Medical Center, Rotterdam, The Netherlands

3Baylor College of Medicine, Houston, Texas 4The U.S. Wound Registry, Woodlands, Texas

5Department of Clinical Science and Education, Wound Centre, Södersjukhuset, Karolinska Institutet, Stockholm, Sweden

6Maccabi Health Services, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel

Wound Repair Regen. 2021 May;29(3):452-459

 

The Wound-QoL is an often used reliable and valid measure, originally developed in Germany. It has been sequentially translated and validated for other languages/coun- tries, for the measurement of health-related quality of life (HRQoL) in patients with chronic wounds. However, a study from the United States postulated its benefits from further adaptations. Furthermore, some patients struggled to provide an answer for some of the items. We aimed to test the cross-cultural structure and psychometric per- formance of the questionnaire to suggest necessary revisions.

Determining the Minimal Important Difference for the Wound-QoL Questionnaire

J. Topp1, C. Blome1, M. Augustin1, N. Mohr1, E. Sebastian Debus2, H. Diener2, R. Sommer1

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

2Department of Vascular Medicine, University Medical Center Hamburg- Eppendorf (UKE), Hamburg, Germany

Patient Prefer Adherence. 2021 Jul 14;15:1571-1578

 

The questionnaire for the quality of life with chronic wounds (Wound-QoL) is a valid and reliable instrument to determine the disease-specific health-related QoL of patients with chronic wounds. For the interpretation of HRQoL scores, it is additionally important to know which differences in scores are considered meaningful. The minimal important difference (MID) is defined as a change in HRQoL that a patient would consider meaningful, such that the patient would judge a treatment to be beneficial and worthy of repeating.

Assessment of stigma related to visible skin diseases: a systematic review and evaluation of patient-reported outcome measures

C. Luck-Sikorski1, P. Roßmann1, J. Topp2, M. Augustin2, R. Sommer2, N.A. Weinberger1

1Research Group: Chronic Diseases and Psychological health (COPE), University of Applied Health Sciences SRH Gera, Gera, Germany

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

J Eur Acad Dermatol Venereol. 2021 Nov 24

 

Misconceptions about visible skin diseases are widespread, and patients often face discrimination and stigmatization due to their condition. The associated negative health and psychosocial consequences of stigmatization in skin diseases have prompted an increase in research activity in recent times, resulting in a wide variety of assessment measures. This study aimed at aggregating and evaluating evidence of psychometric properties and methodological quality of published measures to assess stigma in visible skin diseases.

Was wünschen sich Patienten mit sichtbaren Hauterkrankungen und welche Probleme beschäftigen sie im Alltag?

R. Sommer

Jahrestagung des Arbeitskreises Psychosomatische Dermatologie; 2021.

Patient-reported outcomes measures – measuring wellbeing not only burden of disease

R. Sommer

6th World Psoriasis & Psoriatic Arthritis Conference, 2021; keynote lecture.

Stigma in visible skin diseases - a literature review and development of a conceptual model

N. Germain1, M. Augustin2, C. Francois1, K. Legau3, N. Bogoeva4, M. Desroches1, M. Toumi5, R. Sommer2

1HEOR, Creativ-Ceutical, Paris, France

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

3LEO Pharma, Kopenhagen, Denmark

4HEOR, Creativ-Ceutical, Sofia, Bulgaria

5Public Health Department, Aix-Marseille University, Marseilles, France

J Eur Acad Dermatol Venereol. 2021 Jul;35(7):1493-1504

 

The burden of visible skin diseases (VSDs) includes not only physical symptoms but also psychosocial consequences such as depression, anxiety, impaired quality of life and low self-esteem. Stigmatization was shown to play a major role in people with skin diseases. The aim of the study was to review the evidence for the components, drivers and impacts of (self-)stigma, and to organize the data into a series of conceptual models.

Skin Lesions, Skin Care, and Characteristics of Pruritus in Patients Undergoing Haemodialysis

R. Sommer1, S. Ständer2, M. Augustin1

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

2Department of Dermatology and Center for Chronic Pruritus, University Hospital of Münster, Münster, Germany

Skin Pharmacol Physiol. 2021 Sep 14

 

Pruritus has been shown to be a common and burdensome complaint in the general population. In some diseases, there is an even higher rate and intensity of pruritus such as in chronic kidney diseases. In particular, patients re- quiring dialysis commonly suffer from pruritus with propor- tions between 22.0 and 90.0%. Few data on the characteris- tics and burden of such pruritus have been published. There- fore, the aim of this study was to investigate the extent and profiles of pruritus in such patients related to skin lesions and care.