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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.

PMID:
Epub ahead of print. 34817889
DOI:
10.1111/jdv.17833

Exploring the burden of xerosis cutis and the impact of dermatological skin care from patient's perspective

C. C. von Stülpnagel1, M. Augustin1, N. da Silva1, L. Schmidt2, G.Nippel2, R. Sommer1

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

2Beiersdorf AG, Hamburg, Germany

J Dermatolog Treat. 2021 Sep 21:1-6

 

Xerosis cutis is recognized as a burdensome and stressful condition of the skin, resulting in impaired health-related quality of life (HRQoL). Therefore, it should be treated as a relevant skin disease with detailed care and treatment recommendations.

PMID:
34547964
DOI:
10.1080/09546634.2021.1970704

Interpersonal experiences of stigmatization and sexual impairments, quality of life and depression in patients with psoriasis: The mediating role of social avoidance coping

N. da Silva, M. Augustin, D. Wilsmann-Theis, P. Staubach-Renz, C. von Stülpnagel (2021, September-October).

ePoster presented at 30th European Academy of Dermatology and Venereology (EADV) Congress [Virtual].

Bestimmung der transnationalen gesundheitsbezogenen Lebensqualität: Die kulturübergreifende Validität des überarbeiteten Wound-QoL-Fragebogens

C. von Stülpnagel, N. da Silva, M. Augustin, C. van Montfrans, C. Fife, AM. Fagerdahl, A. Gamus, TM. Klein, C. Bome, R. Sommer (2021, April). 

ePoster presented at 51. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany. [Virtual].

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).

PMID:
Epub 2021 Jun 25. 33988873
DOI:
10.1111/jdv.17348

Effects of secukinumab on disease burden, patient needs and benefits, and treatment satisfaction in patients with plaque psoriasis across european regions: Patient’s perspective data from the PROSE study

N. da Silva, R. Sommer, C-E. Ortmann, P. Jagiello, T. Bachhuber, M. Augustin (2021, April).

ePoster presented at 51. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany. [Virtual].

The importance of patient-centered healthcare against comorbid depression and anxiety in patients with psoriasis

N. da Silva, M. Augustin, C. Hilbring, C. von Stülpnagel, R. Sommer (2021, April).

ePoster presented at 51. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany. [Virtual].

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.

PMID:
34285475
DOI:
10.2147/PPA.S315822

Patients’ and physicians’ perspectives on body surface area affected by psoriasis: Links between disease burden, patient-physician (dis)agreement and patient benefits

N. da Silva, M. Augustin, C. Hilbring, C. von Stülpnagel, R. Sommer (2021, April). 
 

ePoster presented at 51. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany. [Virtual].

Secukinumab effects on patient reported outcomes in plaque psoriasis across Europe: Data from the PROSE study

N. da Silva, R. Sommer, C-E. Ortmann, P. Jagiello, T. Bachhuber, M. Augustin (2021, July). 

 

 

ePoster presented at 6th World Psoriasis & Psoriatic Arthritis Conference [Virtual].

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