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Development of a Specific Variant of Patient Benefit Index (PBI) Assessing Patient Needs, Goals and Benefits in Rosacea Treatment

M. Augustin, R. Sommer, C. Blome, N. Kirsten, A. Langenbruch

Evaluation of patient-reported outcomes including health-related quality of life (HRQoL) and perceived benefits from treatment has become a fundamental component of medical decision-making. Standardized evaluation of treatment benefits in rosacea based on patient preferences is still lacking.

Development and validation of an instrument for recording patient-defined benefits in rosacea therapy based on the Patient Benefit Index (PBI) methodology.

In an open survey of n = 50 patients, potential benefits of therapy from the patient’s perspective were examined. The generated item pool was combined with pre-existing PBI items for other skin conditions and reviewed by an expert panel of dermatologists, psychologists and patients. Items were condensed to n = 25 and converted into a Likert-scaled questionnaire. The validity and feasibility of the resulting Patient Benefit Index for rosacea (PBI-RO) were tested on individuals with rosacea recruited from a German rosacea patient organization.

N = 446 patients with rosacea completed the PBI-RO. The internal consistencies measured by Cronbach’s alpha were high (Patient Needs Questionnaire [PNQ] 0.94). Mean PBI-RO was 1.9 ± 1.2 (scale from 0 = no benefit to 4 = maximum benefit), 23.5% of the patients experienced a PBI-RO < 1 (no clinically relevant benefit). The PBI-RO correlated with HRQoL, health state, current extent of rosacea lesions and treatment satisfaction. The highest correlation was found between PBI-RO and satisfaction with previous treatment (r = −0.59, p < 0.001); correlation with the extent of rosacea lesions was low (r = 0.16, p < 0.001).

The PBI-RO shows satisfying internal consistency and construct validity. It offers the option of a patient-weighted evaluation of the therapeutic benefit of rosacea therapy and may add to more stringent goal orientation in therapy.

Interventions targeting social and self-stigma among people with chronic skin disease – Results from RCTs

J. Traxler, C.F.Z. Stuhlmann & R. Sommer

Oral presentation presented at the European Health Psychology Society Conference (EHPS), Bremen, Germany

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

C. Braren-von Stülpnagel, M. Augustin, N. da Silva, R. Sommer

Poster presented at the 52. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany.

Effects of skin care on psychosocial impairments in people living with atopic dermatitis

C. Braren-von Stülpnagel, M. Augustin, R. Sommer

Poster presented at the 52. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany.

Psychische Komorbidität bei Menschen mit chronischen Hauterkrankungen: eine Übersicht zu neuen Interventionsansätzen

R. Sommer

52. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany (Oral presentation): ID AKS23/03

Implementing Wellbeing in the Management of Psoriasis: An Expert Recommendation

R. Sommer, U. Mrowietz, K. Gaarn du Jardin, I. Kasujee, E. Martini, E. Daudén, G. Fabbrocini, A. Zink, C.E.M. Griffiths, M. Augustin

The main objective of this expert review is to give the concept of well-being a place as an entity within the holistic therapeutic approach for patients with psoriasis. Identifying and defining common goals beyond the skin with the patient and testing them throughout the course of treatment will benefit and enhance treatment success. We propose a series of recommendations for application in clinical practice, providing tangible clinical guidance for implementing well-being in the management of psoriasis.

Entwicklung neuer Messinstrumente zur Erfassung von Cumulative Life Course Impairments (CLCI) bei chronisch-entzündlichen Hautkrankheiten

C. Braren-von Stülpnagel, M. Augustin, L. Westphal, R. Sommer

Poster presented at the 52. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany.

Measuring wellbeing in psoriasis: psychometric properties of the WHO-5 questionnaire

R. Sommer, L. Westphal, U. Mrowietz, S. Gerdes, M. Augustin

Poster presented at the 52. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany.

Development and validation of a measuring instrument for dry skin - the Xerosis Area and Severity Index (XASI)

R. Sommer, M. Augustin, N. da Silva, C. Braren-von Stülpnagel

Poster presented at the 52. Jahrestagung der Deutschen Dermatologischen Gesellschaft (DDG-Tagung), Berlin, Germany.

Social and sexual well-being among young adults coping with stigma of visible chronic skin disease

C.F.Z. Stuhlmann

Oral presentation presented at the European Health Psychology Society Conference (EHPS), Bremen, Germany