Learning lessons for the battle against disease burden and stigmatization in chronic skin diseases: Call for action needed?

In this issue of JEADV, Gisondi et al.1 address one of the key topics in global dermatology: the disease burden from the patient's perspective. Burden was operationalized by measuring health-related quality of life (QoL) with the validated Dermatology Life Quality Index (DLQI); other constructs were assessed using non-validated single items, such as for depression, work impairment and stigmatization. Overall, the study adds to a number of important large-scale surveys on the burden of skin diseases and has a special strength in the unique geographical extent. The results are not unexpected but important since they underline the great impact skin diseases have for the people involved. The data also confirm differences in QoL reductions across indications. Such differences surely exist but it should be noted that the DLQI is not equally applicable and valid for all diseases, for example alopecia areata and vitiligo. Since mean age has not been depicted, some uncertainty about the comparability of the indications remains. Thus, the differences in DLQI observed should not lead to the conclusion that some diseases require less attention and healthcare efforts than others. The study also emphasizes that stigmatization is a burdening factor to patients with many skin diseases, identifying about 20% reporting negative response from others. This might even be an underestimation since large-scale population-based surveys show a much higher prevalence of stigmatizing thinking and attitudes in the normal population.2 The authors shed light on the need of an early intervention to avoid negative impact on the patients' life course. Interventions include proper guideline-compliant treatment but this may not be sufficient. Beyond dermatological treatment, specific interventions often are needed against stigmatization since it can persist in spite of effective medical treatment.3 Notably, public and internalized stigmatization deserve different measurement and interventions.4 In spite of the importance of stigmatization, only a small number of such interventions have been published.5 Some key programmes deserve a mention like the call for action against stigmatization by WHO which triggered an intervention programme for people with visible chronic skin diseases supported by the German government. The process of convincing the ministry of health and the positive outcomes of the intervention series6, 7 are worth to be taken as a best practice example for the fight against stigma as proposed by WHO.8 Overall, the data from Gisondi et al.1 are very helpful to convince stakeholders that disease burden and stigmatization are a pan-European challenge which requires evidence-based solutions from dermatology, psychology, social sciences and politics alike. A call for action on stigmatization on the EU level is needed. The authors would like to thank Anna Rouillard of the EADV, for inviting us to write this commentary article. Open Access funding enabled and organized by Projekt DEAL. None. The authors declare no conflicts of interest. Data sharing is not applicable to this article as no datasets were generated or analysed during the current study.