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Sex-related impairment and patient needs/ benefits in anogenital psoriasis: Difficult-to- communicate topics and their impact on patient-centred care

N. da Silva1, M. Augustin1, A. Langenbruch1, U. Mrowietz2, K. Reich1, D. Thaçi3, W. Boehncke4, N. Kirsten1, A. Danckworth1, R. Sommer1

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

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

3Institute and Comprehensive Centre Inflammation Medicine,University of Lübeck,Lübeck, Germany

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

PLoS One. 2020 Jul 1;15(7):e0235091

 

Genital psoriasis affects 2-5% of psoriasis patients; generalised plaque or intertriginous psoriasis also affects the genital area in 29-40% of cases. Anogenital psoriasis has been associated with significant quality of life impairments, but little is known about specific patient needs/treatment goals. This study aimed to examine the overall and sex-related disease burden, patient needs and treatment benefits in patients with anogenital psoriasis, compared to patients with psoriasis not affecting the anal/genital areas.

PMID:
32609733
DOI:
10.1371/journal.pone.0235091

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.

PMID:
31715033
DOI:
10.1111/jdv.16076

Xerosis cutis und Stigmatisierung: Patientensicht bei Hauterkrankungen und Erkenntnisse über die Auswirkungen einer Hautpflege

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

19. Deutscher Kongress für Versorgungsforschung 2020: ID206

Impact of pruritus in patients with psoriasis: Associations between disease burden, patient needs and interpersonal experiences

N. da Silva, M. Augustin, S. Ständer, C. von Stülpnagel, M. Hubo, C. Hilbring, HJ. Hutt, R. Sommer (2020, February). 

Poster session presented at the Dermatologie KOMPAKT & PRAXISNAH 2020, Dresden, Germany. 

DOI:
10.13140/RG.2.2.24617.34405

Cumulative Life Course Impairment – systematisches Review zur Bestimmung von Indikatoren

C. von Stülpnagel, L. Düpmann, N. da Silva, M. Augustin, R. Sommer (2020, September)

19. Deutscher Kongress für Versorgungsforschung 2020: ID215

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

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

Sommer R, von Stülpnagel C, Fife C, Blasingame M, Anders MJ, Thompson D, Augustin M, da Silva N, Blome C (2020, October). 

Annual Conference of the International Society for Quality of Life Research 2020: ID3111

Body height or height-related cognitive beliefs: What matters the most for the health-related quality of life of children and adolescents with short stature?

B. Mergulhão, JP. Almeida, H. Moreira, MF. Magalhães, M. Bullinger, MC. Canavarro, N. da Silva (2020, October). 

ePoster presented at ISOQOL 27th Annual Conference [Virtual].

Psychological comorbidity in patients with psoriasis: The impact of pruritus and anogenital involvement on symptoms of depression and anxiety

N. da Silva, M. Augustin, C. Hilbring, C. von Stülpnagel, R. Sommer (2020, September).

ePoster presented at 19. Deutscher Kongress für Versorgungsforschung (DKVF): Zugang, Qualität und Effizienz: Gesundheitsversorgung international vergleichen und verbessern [Virtual].

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
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