Publications

J Eur Acad Dermatol Venereol. 2019 Nov;33(11):2029-2038

Many patients with a visible chronic skin disease experience discrimination and stigmatization. This results in psychosocial impairments in addition to the burden of disease and emphasizes the urgency to implement effective stigma-reduction strategies. To synthesize what is known globally about effective interventions to reduce stigma associated with visible chronic skin diseases, a systematic review was conducted. Four electronic databases were searched until May 2018. Studies evaluating interventions to reduce stigmatization in patients with visible chronic skin diseases and applying at least one stigma-related outcome measure were included. Data were extracted on study design, country, study population, outcome measures and main findings. Results were subsequently synthesized in a narrative review. Critical Appraisal Skills Programme tools were used to assess study quality. Nineteen studies were included in the review. Study design was very heterogeneous and study quality rather poor. Thirteen studies addresses patients with leprosy in low- and middle-income countries, and one study each targeted patients with onychomycosis, leg ulcer, facial disfigurement, atopic dermatitis, vitiligo and alopecia. Evaluated interventions were mainly multi-faceted incorporating more than one type of intervention. While 10 studies focused on the reduction in self-stigma and 4 on the reduction in public stigma, another 5 studies aimed at reducing both. The present review revealed a lack of high-quality studies on effective approaches to reduce stigmatization of patients with visible chronic skin diseases. Development and evaluation of intervention formats to adequately address stigma is essential to promote patients' health and well-being.

Br J Dermatol. 2019 Oct;181(4):743-748

Seborrhoeic dermatitis is a common but epidemiologically poorly researched chronic skin disease.

Objectives: To characterize the prevalence and dermatological comorbidity of seborrhoeic dermatitis in Germany.

Hautarzt. 2019 Jul;70(7):520-526

Background: Numerous studies have shown that psoriasis is associated with severe losses in almost all dimensions of health-related quality of life. An important aspect is the stigmatization experience of those affected.

Objective: The aim of this study was to examine the perception of stigmatization from the perspective of patients, relatives and healthcare professionals using a qualitative approach.

Qual Life Res. 2019 Sep;28(9):2553-2563

Achondroplasia, as the most common form of disproportionate short stature, potentially impacts the health-related quality of life (HRQOL) and functioning of people with this condition. Because there are no psychometrically validated patient-reported outcome (PRO) condition-specific instruments for achondroplasia, this study selected and tested available generic, disease-specific and under development questionnaires for possible use in multinational clinical research.

J Eur Acad Dermatol Venereol. 2019 Apr;33(4):700-708

Though patient needs are key drivers of treatment decisions, they are rarely systematically investigated in routine care.

Objective: This study aimed at analysing needs and expectations from the patient perspective in the German and Swiss psoriasis registries PsoBest and Swiss Dermatology Network of Targeted Therapies (SDNTT) with respect to treatment choice, age and gender.

Poster session presented at the ISOQOL 26th Annual Conference, San Diego, California, USA.

E-poster presented at the 28th European Academy of Dermatology and Venereology (EADV) Congress, Madrid, Spain. 

E-poster presented at the 28th European Academy of Dermatology and Venereology (EADV) Congress, Madrid, Spain.

28th European Academy of Dermatology and Venereology Congress 2019: P0918

Child Care Health Dev. 2019 Jan;45(1):79-88

Esophageal atresia (EA) is a rare malformation of the esophagus, which needs surgical treatment. Survival rates have reached 95%, but esophageal and respiratory morbidity during childhood is frequent. Child and parent perspectives and cultural and age-specific approaches are fundamental in understanding children's health-related quality of life (HRQoL) and when developing a pediatric HRQoL questionnaire. We aimed to increase the conceptual and cross-cultural understanding of condition-specific HRQoL experiences among EA children from Sweden and Germany and investigate content validity for an EA-specific HRQoL questionnaire.