This was a prospective anonymous survey conducted among the employees of Novartis Pharma at the company locations Nurnberg (Germany), Rotkreuz (Switzerland), and Basel (Switzerland). Software-based questionnaires were used to collect data on employees’ age and sex, socio-economic and professional aspects, whether they were suffering from AD, PSO, chronic spontaneous urticaria (CSU), lichen (ruber) planus (LP), and/or HS as well as details regarding the disease course. Patients were also asked to state if their disease was diagnosed by a physician. Furthermore, patients were asked whether they were currently under medical care for their skin disease. The extent to which the patients consider their CISD to be controlled/treated and the impact of their CISD on their overall life were asked based on five answer categories (not at all/hardly/ moderately/well/completely and very severe/severe/moderate/little/not at all, respectively) (self-designed questionnaire, can be provided by corresponding authors upon request). For the assessment of the impairment of work ability and productivity and the general daily activity during the last 7 days due to respective CISD, the work productivity and activity impairment (WPAI) questionnaire was used. The WPAI is a validated six-question questionnaire (24). Scores range between 0 and 100%, with higher scores indicating greater impairment. The survey lasted from June 2022 to July 2022 (Germany) and July 2022 to August 2022 (Switzerland).

Statistical calculations were made in SPSS Statistics software (IBM), version 27. Kruskall-Wallis test, Pearson Χ² test, and Spearman correlation test were applied as indicated. Global alpha was set at 5%.

To investigate CISD patients’ perception of the control of their skin disease and to identify aspects associated with poor control, the employees of a pharmaceutical company in the locations in Germany and Switzerland were asked to provide anonymous information via a software-based questionnaire. The questionnaire was sent out via email and newsletter to about 15.000 employees – concrete numbers on read-through rate are unknown. Overall, 905 employees answered the questionnaire. Of these, 222 participants (24.5%) reported having at least one of the following CISDs: AD, PSO, CSU, HS, and LP. Among them, 23 stated having two CISDs, and two and one stated having three and four CISDs, respectively, resulting in a total of 252 cases. The prevalence of the investigated CISDs were: AD: 12.0%, PSO: 7.6%, CSU: 3.8%, HS: 1.7%, and LP: 0.5%. Of the 222 people having stated to suffer from investigated CISDs, 195 delivered a detailed report about at least one skin disease (211 cases). Of these 211 cases, 85.3% were diagnosed by a physician according to patient statements. The characteristics of these 195 participants are presented in Supplementary Table S1.

Participants suffering from CISD were asked about how well they consider their skin disease controlled. Figure 1A shows the proportions of participants considering their CISD as being: (i) completely or well controlled, (ii) moderately controlled, or (iii) hardly or not at all controlled. Only 39.6% described their skin disease as being completely or well controlled. The proportion of participants considering their CISD as being hardly or not at all controlled (in the following together referred to as poorly controlled) was 28.7%. When looking at the specific types of CISD, about one third of participants with PSO (35.9%) or HS (33.3%) reported poor disease control (Figure 1B). Participants suffering from CSU or AD showed the largest proportion of those reporting completely or well controlled CISD (42.9 and 41.6%, respectively), while this proportion was particularly small in case of HS (16.7%).

We then wondered why such a substantial proportion of participants with CISDs considered their disease as poorly controlled and inquired whether they were currently under medical care for their skin disease. As shown in Figure 2A, only 35.5% stated that they were. Interestingly, this proportion did not vary between the three disease-control categories (p = 0.549). When asking about the CISD course in the last 12 months, we found a negative association between perceived disease control and the number of acute CISD phases (p = 0.042) (Figure 2B), which was confirmed by correlation testing (r_s = 0.16, p = 0.031). Surprisingly, there was no association between perceived disease control and the total number of symptomatic days per year (p = 0.856) (Figure 2C).

Thirdly, we were interested in the effects of observed poor disease control on the general daily activity and the work productivity and ability of those affected. There was a clear positive association of poor disease control and the percent general daily activity impairment due to skin disease (mean ± SD; completely or well controlled disease: 16.2 ± 15.9% of general daily activity impairment; moderately controlled disease: 23.1 ± 23.9% of general daily activity impairment; hardly or not at all controlled disease: 28.3 ± 24.5% of general daily activity impairment; p = 0.005) (Figure 3A). Moreover, the percent loss in work productivity during working hours due to skin disease (presenteeism) increased dependent on the poorness of disease control (mean ± SD; completely or well controlled disease: 12.5 ± 12.1%; moderately controlled disease: 17.5 ± 17.0%; hardly or not at all controlled disease: 19.0 ± 15.9%; p = 0.005) (Figure 3B). Correlation analyses further confirmed the statistical link with both the general activity impairment (r_s = 0.24, p = 0.001) and presenteeism (r_s = 0.20, p = 0.001).

Finally, when asking the participants about the impact of the CISDs on their overall life, 41.4 and 20.7% of participants with poor disease control stated a moderate or severe to very severe impact (P = <0.001) (Figure 3C). Correlation analysis also demonstrated the association between lower of disease control and the negative impact of disease on the overall lives of those affected (r_s = 0.31, p < 0.001). Considering the type of skin diseases (CSU, AD, PSO, HS), participants with HS most often (33.3%) answered that the CISD had a severe or very severe impact on their lives (data not shown).

Intensive work by basic scientists, clinical researchers, and pharmaceutical company employees over the past two decades has led to the approval of highly effective drugs for certain CISDs (e.g., PSO) (7). To our surprise, in the investigated health-aware environment, almost 30% of the participants with CISDs rated their skin disease as hardly or non-controlled. The proportion of participants feeling this way was particularly high among participants with PSO, for whom highly effective drugs have been approved (7), and patients with HS, who were only moderately treatable with drugs at the time of the survey (13). We found significant general daily activity impairment, relevant presenteeism, and negative impact on the life as a whole as possible consequences of the inadequate disease control. Poor skin disease control therefore seems to have a significant impact on both those affected and the society. We have not found any study comparable to our work (internal company survey). Instead, numerous surveys conducted in medical institutions have been published, which, however, may not fully represent the total patient population, since only patients in medical care are represented. Relevant data come from some general population-based studies conducted online. Using an online questionnaire, a study run in 2016 in France, Germany, Italy, Spain, and UK documented 24.7% presenteeism for AD patients (28). A Japanese study from 2017 showed dissatisfaction with their health (25.5, 28.7, and 31.7%) and high presenteeism (22.4, 15.4, and 21.2%) among patients with AD, PSO, and CU, respectively (29). The value of 16% presenteeism determined in our study for all participants with skin diseases is slightly lower than the presenteeism in the studies described above. This could be related to the location of the survey (in our case in a company). According to an online study from Ireland published in 2021, 52% of AD patients considered their disease as being poorly controlled (30).

In contrast to the consequences, we found only vague hints for the reasons for the perceived poor disease control. There was an association with the number of acute disease phases, but not with the number of symptomatic days per year; thus, the disease course (phasic) certainly plays a role. Interestingly, no association with lacking current medical care was found, which was generally high.

We speculate that restrictions in medical care due to racial and ethnic aspects, which are relevant in other parts of the world (31), are not likely to have a relevant impact in our study. We rather suspect that the major cause for insufficient current medical care is a disappointment with medical care due to either delay in diagnosis [e.g., HS (32)], a limited efficacy of approved drugs [e.g., HS (13)], or the doctors’ hesitation to prescribe expensive, albeit highly effective drugs (33, 34). Regarding prescriptions, the most prevalent barriers to prescription of biologics reported by physicians in Germany in 2017 were the high cost, the low reimbursement and the fear of recourse (35). Unfortunately, this situation seems not to have relevantly changed (36). For example, only 3.7% of PSO patients were treated with biologics in Germany in 2020 (33). Data collected in ten western countries in 2019 showed that only 2.3% of patients with AD received biologics (37) and that in 75% of patients, treatment expectations were met only partially or not at all (37). With HS, the situation may be even worse. HS is a disease that, due to the specific pathomechanisms, leads to irreversible destruction of the normal skin architecture (38) and the classic treatment of HS does not improve patient’s quality of life in the long term (3). Patients consider a sustained therapeutic success as most important (39, 40) and treatment with biologics was associated with higher patients’ satisfaction (41). Nevertheless, data from Denmark indicated a mean time from the first systemic therapy to the start of a biological therapy of 15.3 years (42).

There are several limitations in our study. A relatively small proportion of employees answered the questions asked, which could create a potential bias. Moreover, the study design did not include assessment of skin disease severity and therapy recording by a dermatologist.