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Plaque psoriasis is one of the most common visible chronic skin diseases.1, 2 People affected often experience a psychological burden and social withdrawal.3, 4 In this context, a significant part of the social burden results from feelings of exclusion and stigmatization.5-12 For this reason, the reduction of stigmatization was declared as a global goal in the 2014 resolution of the World Health Organization (WHO). WHO member states were asked to introduce public measures to reduce stigmatization. WHO’s 2016 global report on psoriasis emphatically reiterated this call to action.13
Against this background, the National Conference on Health Care in Psoriasis in collaboration with the regional German Psoriasis Networks (PsoNet) has launched an initiative to achieve better understanding of the stigmatization of people with psoriasis and other chronic visible skin diseases. The starting point of this research was to determine the extent to which the German public experiences psoriasis as a stigmatizing condition.
An initial study of the perception and view of psoriasis showed clear knowledge deficits and some prejudice exist against those affected by the condition.14 It was also apparent that a majority of the public are personally acquainted with people who have psoriasis and regard the disease as very burdensome. Only a small minority believes that psoriasis is contagious. This study did not clarify how widespread stigmatizing attitudes are in the German population. A further study showed the awareness of stigmatization by those affected, their families and their medical caregivers. This study also showed that self‐stigmatization plays an important part in this process. People with psoriasis, their families and medical caregivers mention self‐stigmatization as their greatest burden or obstacle in different areas of life, including work, leisure activities and relationships.15
For this background, a cooperative project on the ‘Destigmatization of chronic visible skin diseases’ (Entstigmatisierung bei chronischen sichtbaren Hautkrankheiten ; ECHT) between the Federal Ministry for Health and experts representing the medical profession, science and patients has been initiated. This activity has in the meantime evolved into a 3‐year publicly funded project to investigate stigmatization and develop targeted interventions.16 As a part of this project, a systematic literature review on strategies for the destigmatization of people with visible skin diseases was carried out. The results showed a lack of high‐quality studies on effective approaches to reduce the stigmatization of patients with visible chronic skin diseases. The development and evaluation of appropriate interventions to overcome stigma are of central importance in promoting patients’ health and well‐being.17
This study was conducted to further explore these issues in order to be able to better define target groups and respective intervention formats. Therefore, the following research questions were addressed:
- Which proportion of the general German population is familiar with psoriasis?
- What is known about existing public campaigns by the general German population?
- What specific prejudices exist in the German population with respect to psoriasis?
- Have people observed that those affected with psoriasis are disadvantaged?
- What specific signs of stigmatization exist in the German population with respect to psoriasis?
- Which population groups (with regard to sociodemographic characteristics) may have a greater tendency for stigmatizing attitudes?
Thus, our data can also serve as the basis for developing interventions as part of the funded project.
Materials and methods
To answer the research questions, a cross‐sectional population‐representative survey was carried out by the forsa Institute for Social Research and Statistical Analysis in 2017 and 2018.
The studies surveyed 2004 (2017) and 2001 (2018) people who were approached and recruited through random telephone contact. In the phone call to each household, the so‐called ‘birthday‐method’ was applied for. This means that independently of who answered the call (e.g. child or an adult) it was always asked for the person in the household who is at least 18 years old and had the last birthday. This procedure followed a consecutive approach until at least 2000 participants were reached. The population was the resident population of the Federal Republic of Germany (those with sufficient knowledge of German) age 18 years and above.
The weighting of the two random samples (2017 and 2018) was adjusted by region, gender and age (basis for the weighting: official current population statistics of the Federal Statistical Office). The survey periods were 2–11 October 2017 and 12–28 November 2018.
The items were developed in an expert consensus consisting of three dermatologists, one epidemiologist and two persons affected with psoriasis. The items partly derived from existing questionnaires, and others were generated de novo following the research questions. To test for changes over time of basic views about psoriasis among the German population, some items were collected in identical form as during the previous survey in 2016.14
In order to capture potential stigmatization, in the second part of the survey questions to assess this issue were posed directly and indirectly. The indirect part of the survey did not ask respondents about their personal opinion but about their assessment of the attitudes of others. An overview of all questions/items asked in all surveys is given in Table 1.
|Variable||Question||Answer options||Origin and/or reason to include this question||2016||2017||2018|
|Age||Open answer (afterwards for the report grouped by forsa into: 18–29/30–44/45–59/60+ years)||Standard question||x||x||x|
|Geographic region||Open answer||East–west and North–south differentiation follows common use of population‐based data||x||x||x|
|Education||Low (Hauptschule)/medium (Realschule)/high (Abitur)/university of applied science/university degree||Standard classes||x||x||x|
|Marital status||Married (living together)/married (live apart from partner)/single/divorced/widowed||Standard classes||x||x||x|
|Number of person per household||Open answer||Standard question||x||x||x|
|Knowledge of disease||‘Have you ever heard or read about psoriasis?’||Yes/no/I do not know/no information provided||Consensus question||x||x|
|Knowledge of disease||‘Psoriasis’ is also called „Schuppenflechte“ in German. Have you ever heard or read about it?’||Yes/no/I do not know/no information provided||Consensus question||x||x|
|Source of information||‘Where have you ever heard or read about psoriasis?’||From the family doctor/skin doctor/information from the health insurance company/family members, friends, acquaintances/the media/other (multiple answers possible)||Follows questions in national health care surveys (PsoBest)||x||x|
|Personal affection||‘Do you personally know anyone who has had psoriasis, or have you ever had psoriasis yourself?’||Yes, I know somebody/yes, affected myself/no, none of them (multiple answers possible)||Consensus question||x||x||x|
|Attitudes about psoriasis||
||Is correct/does not apply/I do not know/no information provided||Consensus question||x||x||x|
|Attitudes about psoriasis||
||In any case/rather/rather not/definitely not/I do not know/no information provided||Consensus question||x||x||x|
|Knowledge about public campaigns||‘Have you ever heard or read about the “Bitte berühren” campaign in connection with psoriasis or Schuppenflechte?’||Yes, I heard about it/no, I never heard about it/I do not know/no information provided||Consensus question||x||x|
|Campaign ‘Bitte berühren’||What have you heard or read about the ‘Bitte berühren’ campaign?||Open answer||Consensus question||x||x|
|WHO||The World Health Organization (WHO) has declared psoriasis to be one of five serious noncommunicable diseases. Were you aware of this or not?||Yes, I heard about it/no, I never heard about it/I do not know/no information provided||Consensus question||x||x|
|World Psoriasis Day||And have you ever heard of ‘World Psoriasis Day’, which is held every year, or have you not yet heard of it?||Yes, I heard about it/no, I never heard about it/I do not know/no information provided||Consensus question||x||x|
|Discrimination observed||Have you ever experienced that people with visible skin diseases were disadvantaged?||Yes/no/do not know||Consensus question||x||x|
|If so, in which context||Open answer||x|
|Believe about existence of discrimination||Do you believe that people with visible skin diseases are disadvantaged in Germany?||Yes/no/do not know||Consensus question||x||x|
|Disease burden||How do you yourself feel about the disease?||0–10 (0 = not at all bad, 10 = very burdensome)||Consensus question||x||x|
|Stigmatization of thirds||
Most people …
… have pity on people who suffer from psoriasis
… think that psoriasis is contagious
… are disgusted with psoriasis
… do not want to touch/shaking hands with people with psoriasis
|In any case/rather/rather not/definitely not/I do not know/no information provided||Consensus question||x||x|
|Stigmatization of thirds||Others do not find people with skin diseases attractive.||In any case/rather/rather not/definitely not/I do not know/no information provided||Related to the validated 6‐Item Stigmatization Scale||x|
|Stigmatization of thirds||Others stare at people with skin lesions.||In any case/rather/rather not/definitely not/I do not know/no information provided||Related to the validated 6‐Item Stigmatization Scale||x|
|Stigmatization of thirds||Others find it unpleasant to touch someone with a skin disease.||In any case/rather/rather not/definitely not/I do not know/no information provided||Related to the validated 6‐Item Stigmatization Scale||x|
|Stigmatization of thirds||Others think psoriasis is contagious.||In any case/rather/rather not/definitely not/I do not know/no information provided||Related to the validated 6‐Item Stigmatization Scale||x|
|Stigmatization of thirds||Others avoid people with skin diseases.||In any case/rather/rather not/definitely not/I do not know/no information provided||Related to the validated 6‐Item Stigmatization Scale||x|
|Stigmatization of thirds||Other people make disturbing remarks about people with skin diseases.||In any case/rather/rather not/definitely not/I do not know/no information provided||Related to the validated 6‐Item Stigmatization Scale||x|
|Knowledge of term ‘Stigmatization’||Do you know or ever heard the term ‘stigmatization’?||Yes/no/no information provided||x|
|Understanding of what stigmatization means||Do you know what stigmatization means or do you not know this precisely?||Yes/no/no information provided||x|
The aim of these indirect methods was to exclude distortion due to social acceptability.
These items covered:
- the experience of discrimination among people with visible skin symptoms,
- views about ‘other people’s’ prejudices against people with psoriasis.
This included questions about the scenarios: ‘people should take better care of themselves’ as well as ‘don’t want to touch people with psoriasis’ and ‘find psoriasis disgusting’.
Use of the term ‘psoriasis’ was avoided throughout, and instead, the survey referred to Schuppenflechte , because the earlier study showed that familiarity with the German term is far greater in the study population.15
The initial descriptive analysis was conducted using SPSS version 23.0 (IBM Corp, Armonk, NY, USA) for Windows. In case of missing values, these were excluded from the respective subanalyses, but not from the entire analyses. For the descriptive analyses, age was already pregrouped by forsa into 18–29, 30–44, 45–59 and 60 years or older (Table 1). For the regression analyses, age was used as continues variable. To determine which variables independently are associated with the assessment of the prejudices, ‘they should take better care of themselves’ (yes/no), ‘don’t want to touch people with psoriasis’ (yes/no) and ‘find psoriasis disgusting’ (yes/no), binary logistic regression analysis was carried out for each prejudice. The following independent variables were included in the analysis. ‘I know someone with psoriasis’ (yes/no), ‘I have psoriasis myself’ (yes/no), ‘I would want to have a relationship with someone affected’ (yes/no) and education (no school‐leaving qualification/mandatory secondary education/O‐levels/polytechnic institute/university of applied science/A‐levels/university degree). The analysis was adjusted for age and gender. The explanation of variance by the regression model was expressed by means of Nagelkerke’s R 2. The significance level was set at P < 0.05.
Among the 2004 respondents in 2017, there were 1050 (52.4%) men and 954 (47.6%) women. The average age was 53 years ± 16.98 (median = 54 years). Among all participants, 27% had completed technical training or an university degree, 25% had A‐levels (Abitur ), 28% had O‐levels, 14% had mandatory secondary schooling, and 5% had no or another school‐leaving qualification.
In 2018, 1078 (53.9%) of the respondents were men and 923 (46.1%) women. The average age of respondents in 2018 was 53 years ± 17.53 (median = 54 years); the youngest participant was 18, and the oldest was 95 years.
By respondents’ self‐report, 46% (2017) and 48% (2016) had learned about psoriasis from family members or from friends and acquaintances; 32% (2017 and 2016) from the media; 13% (2017) and 16% (2016) from a dermatologist; 13% (2017) and 14% (2016) from the GP; and 7% (2017 and 2016) from health insurance (assessed in 2016 and 2017 only).
General knowledge about psoriasis
A total of 50% (2016), 49% (2017) and 44% (2018) of respondents said they knew someone affected by psoriasis, each 6% counted themselves as affected (Fig. 1). Likewise, in both all surveys similar percentages of those affected regarded psoriasis as very burdensome [93% (2016), 90% (2017) and 92% (2018) respectively] and only a small number [respectively, 9% (2016 and 2017) and 6% (2018)] regarded psoriasis as contagious. The percentage of those who believe that there are effective medications against psoriasis was 59% in 2016 and each 51% in 2017 and 2018 (Fig. 2).
Attitudes towards people with psoriasis
Also stable over time were the percentages of those who had reservations (rather not/definitely not) about eating a meal at the same table as a person with psoriasis (each 5% in 2016, 2017 and 2018), those who would not shake hands (each 9% in 2016 and 2017 and 7% in 2018), who would not want to live in the same household (6% in 2016, each 9% in 2017 and 2018) and who would not want go swimming together (19% in 2016, 20% in 2017 and 17% in 2018) or enter into a relationship (20% in 2016, 24% in 2017 and 20% in 2018) with someone who has psoriasis (Fig. 3).
In 2017, 74% of respondents and 68% in 2018 believe that people with visible skin diseases are treated in discriminatory ways (Table 2). In both surveys, 35% stated that they have observed others being treated with such discrimination. In 2018, of those who have observed discrimination, every fifth person has noticed that people with visible skin diseases were discriminated against in the workplace (21%) or in public spaces (18%). Besides, 15% say that they have already noticed that other people have avoided proximity and contact with those affected. Exclusion in school of people with visible skin diseases has been experienced by 14% of the respondents.
|Respondents (%) who believe that people with visible skin diseases are discriminated against (2017/2018)||Respondents (%) who have observed people with visible skin diseases being treated in discriminatory ways (2017/2018)|
|18–29 years of age||74/60||37/33|
|30–44 years of age||80/74||37/41|
|45–59 years of age||79/72||39/37|
|60 years and older||66/63||29/29|
|Compulsory secondary schooling||66/62||31/28|
|A‐levels, university degree||79/70||36/35|
In response to the question what most people think about people with psoriasis (assessed only in 2017), 45% affirmed (‘definitely’ or ‘probably’) that most think that people with psoriasis should take better care of themselves. Beyond that, 59% stated that most people do not want to touch someone with psoriasis and 69% believe that most people find psoriasis disgusting.
In total, 84% agree completely or to some extent with the statement that most people stare at people with skin problems (Table 3). To a similar extent, respondents agree with the statements that most people feel uncomfortable touching someone with a skin disease (81%), that they do not find those affected attractive (81%) or that most people find psoriasis disgusting (79%).
|The statement applies||Definitely (%)||To some extent (%)||Less so (%)||Definitely not† (%)|
|Most people …|
|… stare at people with skin changes.||45||39||11||3|
|… find it uncomfortable to touch someone with a skin disease.||33||48||12||4|
|… find people with skin diseases unattractive.||32||49||11||3|
|… find psoriasis disgusting.||32||47||12||4|
|… feel sorry for people with psoriasis.||32||44||17||4|
|… avoid people with skin diseases.||26||44||21||5|
|… believe that psoriasis is contagious.||23||42||19||6|
|… believe that people with psoriasis should take better care of themselves.||23||36||25||12|
|… comment negatively about people with skin diseases.||21||34||31||9|
To reach 100% missing responses = ‘don’t know’.
Three‐quarters of the respondents fully agree or agree to some extent that most people feel sorry for people who suffer from psoriasis (76%). Seventy per cent think that most people avoid people with skin diseases. Two‐thirds believe that most people think psoriasis is contagious (65%).
According to 59% of respondents, most people believe that the statement that people with psoriasis should take better care of themselves is definitely true or true to some extent. More than half (55%) of respondents agree that most people make negative remarks about people with skin diseases (assessed only in 2018).
The regression analysis (based on the data of 2017) to determine associations of prejudice showed that male gender and higher age and ‘willing to enter a relationship with someone affected’ were significantly associated with believing that people find psoriasis disgusting (Table 4). With respect to the dependent variable ‘not wanting to touch a person with psoriasis’, only higher age was significantly associated (Table 5). For the dependent variable ‘should take better care of themselves’, education (university of applied science) and lower age were significantly associated (Table 6).
|Know someone with psoriasis||Yes†||910|
|Oneself affected by psoriasis||Yes†||118|
|Willing to enter a relationship||No†||436|
|Education||No school‐leaving qualification||34||1.952||0.949–4.016||0.069|
|Mandatory secondary education||251||1.075||0.764–1.512||0.679|
|University of applied science||133||1.114||0.673–2.142||0.623|
- Survey year: 2017; data are adjusted for gender and age.
- CI, confidence interval; OR, odds ratio.
Reference category; Nagelkerke’s R 2 = 0.062.
|Know someone with psoriasis||Yes†||903|
|Personally affected by psoriasis||Yes†||116|
|Willing to enter a relationship||No†||436|
|Education||No school‐leaving qualification||34||0.977||0.479–1.995||0.949|
|Mandatory secondary education||250||1.093||0.798–1.496||0.579|
|University of applied science||131||0.963||0.647‐ 1.433||0.853|
- Survey year: 2017; data are adjusted for gender and age
- CI, confidence interval; OR, odds ratio.
Reference category; Nagelkerke’s R 2 = 0.024.
|Know someone with psoriasis||Yes†||901|
|Personally affected by psoriasis||Yes†||120|
|Willing to enter a relationship||No†||426|
|Education||No school‐leaving qualification||31||0.745||0.354–1.567||0.438|
|Mandatory secondary education||248||1.124||0.820–1.540||0.469|
|University of applied science||129||1.648||1.098–2.472||0.016|
- Survey year: 2017; data are adjusted for gender and age.
- CI, confidence interval; OR, odds ratio.
Reference category; Nagelkerke’s R 2 = 0.045.
The aim of the present study was to determine the extent of stigmatization of people with psoriasis in the general German population and to provide a first approximation of vulnerable groups with prejudices.
The rationale and compelling need for the survey emerged from the 2016 WHO global report on psoriasis which emphasized the necessity for measures against stigmatization in member states in response to a 2014 WHA resolution. This project had the aim to provide the requisite data as a basis for action.
Unlike field research on selected patient cohorts, for example, in doctors’ practices or clinics, representative surveys have the advantage of reducing the risk of bias based on selection. With regard to the present research question, this advantage outweighs the disadvantage of a restricted data set that provides only a small number of further differentiating personal details about respondents.
The direct survey revealed a possible aversion to people with psoriasis or reluctance to have contact with them in a small but significant percentage of respondents. However, the indirect questions, which were about the imputed attitudes of others, give indications of stronger prejudices against people with psoriasis. The majority of respondents stated that other people find psoriasis disgusting and have a negative attitude. Further, a majority of people believe that people with psoriasis are discriminated against. More than 30% further stated that they had personally observed such discriminatory treatment. Qualitative interviews with affected people, family members and medical care personnel have shown similar results.16 The present data suggest that the stigmatization of chronic skin diseases like psoriasis is still entrenched among the German population, as it is in other countries.10 While for the German population, 7–9% stated to definitively not like to shake hands with a person affected and 6–9% do not want to live together in a household, results from the United States showed much stronger rejection for not wanting to shake hands with (39%) and having the persons in the images in their home (32%).10 Regardless of possible distortions due to survey methodology and setting (e.g. social desirability which might be higher in telephone surveys and a selection bias due to refusals to respond), this shows that our society has not reached the level of awareness called for by the WHO when it comes to the treatment of people with visible skin diseases.
These results highlight the necessity for public measures against the stigmatization of people with visible skin abnormalities. The ECHT project that is currently being implemented, and which develops approaches for destigmatizing interventions with the support of the Federal Ministry of Health at sites where those who stigmatize and the stigmatized encounter each other, could lead the way in this context.17 Although ‘knowing someone affected’ showed not to be significantly associated with stigmatizing attitudes in our analyses, it was proved for in a survey in the United States on stigmatizing attitudes10 which strengthen the abovementioned approach of encounter between stigmatized and potentially stigmatizing people. Results from the regression analyses imply that gender, age and education level and related health literacy of the target groups of respective interventions should be taken into account. Besides, other studies have shown that stigmatization plays an important role in the medical context.10, 16 These results are taken into account in the newly developed and currently tested interventions (within the ECHT project), which are addressed to medical students and (pre)school teachers to sensitize them with regard to this topic.
It is remarkable that the existing scientific literature includes very few studies about the stigmatization of chronic visible skin diseases or specifically about interventions to reduce stigmatization.18 In future, this requires differentiated data, which better represent the views of those affected and which allow for a better understanding of the mechanisms of stigmatization. Alongside stigmatization by others, self‐stigmatization is probably also important.17, 19 Such self‐stigmatization, and the resultant psychological stress, is reinforced not so much in the general public sphere but in the familiar private context and in the familiar medical environment.17
In summary, the population survey data presented reveal that people with psoriasis, and by analogy also those with other chronic visible skin diseases, face a hostile attitude in relevant parts of the public. They indicate the need for further systematic measures and research data. These research data should focus on the assessment of more specific population groups such as different professions (e.g. journalists, hairdressers) in order to develop and/or adapt interventions against stigmatization for specific target groups.
The authors thank the Scientific Communication Team of the IVDP, in particular Merle Twesten and Mario Gehoff, for copy editing.