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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.

Secukinumab effects on disease burden, patient needs and benefits, and treatment satisfaction in patients with plaque psoriasis across European regions: patient perspective data from the PROSE study

N. da Silva1, R. Sommer1, C.-E. Ortmann2, P. Jagiello2, T. Bachhuber2, M. Augustin1

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

2Novartis Pharma AG, Basel, Switzerland

J Eur Acad Dermatol Venereol. 2021 Nov;35(11):2241-2249

 

Cross-cultural differences in healthcare policies and patient–physician communication may influence the quality of care and patients’ perceived benefits and satisfaction with psoriasis treatment.

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).

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

R. Sommer

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

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

R. Sommer

Jahrestagung des Arbeitskreises Psychosomatische Dermatologie; 2021.

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.

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.

Disease burden and patient needs and benefits in anogenital psoriasis: developmental specificities for person-centred healthcare of emerging adults and adults

N. da Silva1, C.C. von Stülpnagel1, A. Langenbruch1, A. Danckworth1, M. Augustin1, R. Sommer1

German 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

J Eur Acad Dermatol Venereol. 2020 May;34(5):1010-1018

 

Establishing romantic relationships involving cohabitation and/or sexual intercourse is an overriding task for many people during emerging adulthood, i.e. from their late teens through the twenties. The diagnosis of anogenital psoriasis may hinder social/intimate relationships, resulting in higher disease burden in this age group.

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.

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.