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2020

Translating the WHA resolution in a member state: Development, testing, and evaluation of interventions against stigmatization of people with visible skin diseases.

R. Sommer, S. Mrowietz, R. von Spreckelsen , U. Mrowietz, C. Luck-Sikorski, N. Weinberger, M. Augustin (2020, September).

29th European Academy of Dermatology and Venereology Congress 2020 (Oral presentation): ID680

Umsetzung der WHA-Resolution in Deutschland: Entwicklung, Erprobung und Evaluation von Interventionen zur Entstigmatisierung von Menschen mit sichtbaren chronischen Hauterkrankungen

R. Sommer, S. Mrowietz, R. von Spreckelsen , U. Mrowietz, C. Luck-Sikorski, N. Weinberger , M. Augustin

19. Deutscher Kongress für Versorgungsforschung 2020 (Oral presentation): ID142

The Applicability of the “Revised Burden Measure” in Pediatric Settings: Measuring Parents’ Caregiving Burdens and Uplifts

N. Silva1,2, M. Pereira1, M. C. Canavarro1, R. Montgomery3, C. Carona1,4

1University of Coimbra, Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Educational Sciences, Coimbra, Portugal

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

3Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee, Milwaukee, WI, USA

4Cerebral Palsy Association of Coimbra, Coimbra, Portugal

J Child Fam Stud 2020; 29: 3302-3316

 

In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the “Revised Burden Measure” in a sample of parents of children with and without chronic health conditions. The “Revised Burden Measure” and self-reported measures of quality of life and mental health were administered to a sample of parents who had children with (n=277) or without (n=117) chronic health conditions.

DOI:
10.1007/s10826-020-01832-z

Xerosis cutis, weit mehr als nur „Trockene Haut“?

R. Sommer, M. Augustin, N. da Silva, L. Schmidt, G. Nippel, C. von Stülpnagel (2020, October)

UKE-Studie deckt psychosoziale Belastungen Betroffener auf. DERM 2020 (invited talk)

Characterizing treatment-related patient needs in atopic eczema: insights for personalized goal orientation

M Augustin1, A Langenbruch1, C Blome1, M Gutknecht1, T Werfel2, S Ständer3, S Steinke3, N Kirsten1, N Silva1, 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

2Division of Immunodermatology and Allergy Research, Department of Dermatology and Allergy, Hannover Medical School, Hanover, Germany

3Center for Chronic Pruritus, Department of Dermatology, University Hospital Muenster, Muenster, Germany

J Eur Acad Dermatol Venereol. 2020 Jan;34(1):142-152

 

Atopic eczema (AE) is a common and burdensome chronic skin disease. Clinical guidelines suggest an evidence-based, personalized and stepwise treatment approach. Only few studies have so far focused on the specific patient needs in treatment.

PMID:
31465587
DOI:
10.1111/jdv.15919

A systematic review on quality of life assessment in adults with cerebral palsy: challenging issues and a call for research.

A.C. Alves-Nogueira1, N. Silva2, H. McConachie3, C. Carona4

1Cerebral Palsy Association of Coimbra, Portugal

2Faculty of Psychology and Education Sciences, University of Coimbra, Portugal

3Institute of Health and Society, Newcastle University, United Kingdom

Res Dev Disabil. 2020;96:103514

 

Little is known about the quality of life (QoL) of adults with cerebral palsy (CP). This systematic review aimed to examine the extent to which methodological best practices have been applied to achieve valid and informative QoL assessments for this population.

PMID:
31706133
DOI:
10.1016/j.ridd.2019.103514

Stigmatisierung durch Haarausfall – eine systematische Literaturübersicht

M. C. Schielein1, L. Tizek1, S. Ziehfreund1, R. Sommer2, T. Biedermann1, A. Zink1

1Klinik und Poliklinik für Dermatolo- gie und Allergologie am Biederstein, Fakultät für Medizin, Technische Universität München

2Institut für Versorgungsforschung in der Dermatologie und bei Pflege- berufen (IVDP), Universitätsklinikum Hamburg-Eppendorf (UKE), Hamburg

J Dtsch Dermatol Ges. 2020 Dec;18(12):1357-1369

 

Haarausfall ist ein Symptom, das Stigmatisierung und starke Einbußen in der Lebens- qualität mit sich bringen kann. Ziel dieser systematischen Übersichtsarbeit war es, die Literatur zum Thema Stigmatisierung bei Haarausfall auszuwerten. Mit vordefinier- ten MeSH-Begriffen und Schlagwörtern wurde eine systematische Suche in den Da- tenbanken MEDLINE (PubMed), EMBASE, PsycINFO und PsycNET durchgeführt.

Hair loss is a symptom that can cause stigmatization and severe impairment of qua- lity of life. The aim of this systematic review was to evaluate the literature on stig- matization of hair loss. Using predefined MeSH terms and keywords, a systematic search was performed in the databases MEDLINE (PubMed), EMBASE, PsycINFO and PsycNET.

PMID:
33373136
DOI:
10.1111/ddg.14234_g

Perception and determinants of stigmatization of people with psoriasis in the German population

R. Sommer1, J. Topp1, U. Mrowietz2, N. Zander1, 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

2Psoriasis-Center at the Department of Dermatology, University Medical Center Schleswig-Holstein, Kiel, Germany

J Eur Acad Dermatol Venereol. 2020 Dec;34(12):2846-2855

 

Perception of psoriasis in the general population is characterized by knowledge deficits and prejudice against those affected. The extent and possible predictors of stigmatizing attitudes remain unclear.

PMID:
32277524
DOI:
10.1111/jdv.16436

Development and psychometric evaluation of the U.S. English Wound-QoL questionnaire to assess health-related quality of life in people with chronic wounds

R.Sommer1, C. C. von Stülpnagel1, C. E. Fife2,3, M. Blasingame3, M. J. Anders4, D. Thompson4, M. Augustin1, N. da Silva1, C. Blome1

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

2Baylor College of Medicine, Houston, Texas, USA

3The U.S. Wound Registry , The Woodlands, Texas, USA

4CHI St. Luke's Wound Clinic , The Woodlands, Texas, USA

Wound Repair Regen. 2020 Sep;28(5):609-616

 

People with chronic wounds perceive an impaired health-related quality of life (HRQoL). For the assessment of HRQoL, valid instruments are needed. Therefore, the Wound-QoL questionnaire was originally developed and psychometrically validated for use in Ger- many. As the Wound-QoL is to be used in numerous countries, international versions are required. Therefore, this study aimed to psychometrically validate the U.S. English Wound-QoL version. Upon translation into U.S. English, psychometric testing was per- formed based on cross-sectional data deriving from the U.S. Wound Registry.

PMID:
33372379
DOI:
10.1111/wrr.12837

Impact of moderate to severe pruritus in patients with psoriasis: Association between disease burden, patient needs and interpersonal experiences


R. Sommer, M. Augustin, C. Hilbring, S. Ständer, M. Hubo, HJ. Hutt, C. von Stülpnagel, N. da Silva

19. Deutscher Kongress für Versorgungsforschung 2020 (Oral presentation): ID285

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