Publications

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.

Psychosocial health (PH) and quality of life (QoL) are important health outcomes. We compared PH and QoL of adolescents conceived with intrazytoplasmatic sperm injection (ICSI) and of naturally conceived controls. The impact of disclosure of ICSI-conception on QoL and PH was quantified.

Oral presentation presented at the conference of the European Society for Dermatology and Psychiatry (ESDaP), Rotterdam, the Netherlands

Oral presentation presented at the conference of the European Society for Dermatology and Psychiatry (ESDaP), Rotterdam, the Netherlands

Poster presented at the conference of the European Society for Dermatology and Psychiatry (ESDaP), Rotterdam, the Netherlands

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

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

Poster presented at the conference of the European Society for Dermatology and Psychiatry (ESDaP), Rotterdam, the Netherlands

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

Alopecia areata is a common skin disease which is associated with psychosocial and financial burden. No curative therapy exists and, hence, affected persons resort to self-financed cosmetic solutions. However, studies on the economic impact of alopecia areata on individuals are limited. To estimate annual individual out-of-pocket costs in persons with alopecia areata, a cross-sectional study using a standardized online questionnaire was performed in Germany, Austria and Switzerland.