Perception and Knowledge of Hidradenitis Suppurativa in Greece: A Cross-Sectional Study of 1301 Individuals

Abstract

Background:

Hidradenitis suppurutiva (HS) is a chronic auto-inflammatory disease with recurrent painful deep-seated nodules.

Aims:

The aim of this study was to qualitatively assess patients’ perception for HS.

Methods:

A descriptive two-step questionnaire survey was conducted from January 2017 to December 2018. The survey was performed through self-assessed, online, standardized questionnaires. Clinico-epidemiological characteristics, medical history, comorbidities, personal perceptions and the impact of the disease on participants’ professional and everyday life were recorded.

Results:

A total number of 1301 Greek people completed the questionnaire. Of them, 676 (52%) reported symptoms resembling HS, whereas 206 (16%) reported that have been officially diagnosed with HS. The mean age of the study group was 39.2 ± 11.3 years. More than half of the diagnosed patients (n = 110, 53.3%) reported that they developed their first symptoms between 12 and 25 years of age. Of the diagnosed patients (n = 206), the majority (n = 140, 68.0%) were females and active smokers (n = 124, 60.1%). Seventy-nine (n = 79, 38.3%) patients reported a positive family history for HS. Ninety-nine (n = 99, 48.1%) patients reported that HS has a negative effect on their social life, 95 (46.1%) on personal life, 115 (55.8%) on sexual life, 163 (79.1%) on their mental health and 128 (62.1%) on their overall quality of life.

Conclusion:

Our study showed that HS seems to be an underteated, time-consuming and cost-intensive disease.

Introduction

Hidradenitis Suppurativa (HS) is a chronic recurrent auto-inflammatory disease whic dramatically affects patients’ quality of life. Patients develop painful deep-seated nodules in body areas that are rich in apocrine glands, while the disease goes through exacerbations and remissions throughout life. Lifestyle factors such as obesity and smoking have a significant impact on disease severity, whereas genetic predisposition has been also reported as a significant risk factor.[1]

The negative impact of HS on patients’ quality of life (QoL) has been well-studied.[2,3,4] Several questionnaires and scales have been utilized to estimate this impact of HS, including the Dermatology Life Quality Index (DLQI), the Hospital Anxiety and Depression Scale (HADS), the UCLA Loneliness Scale (UCLA-Version 3), and the Rosenberg Self-Esteem Scale (RSES).[1] Disease severity (based on Hurley's staging) has been reported to correlate with QoL impairment, while also anogenital involvement, early onset of HS and disease activity have been shown to be closely associated with QoL.[3,5] Last, female sex and late HS onset have been linked with poor sexual function.[3]

However, the low response rate and subsequently the small population size of the cross-sectional studies that have been published so far do not allow for conclusive findings to be drawn. The epidemiology and the impact of the disease on patients’ life widely varies among different regions and countries, therefore comparisons between studies should be interpreted with caution. Moreover, despite the considerable number of studies for HS, some important aspects of the disease are still under-studied. The aim of this study is to qualitatively assess Greek patients’ perception for HS, regarding treatment-, time- and cost-related issues. Secondarily, QoL issues were also investigated. To the best of our knowledge, this is the first study of this type to be performed in HS patients.

Materials and Methods

Participant recruitment

A descriptive two-step questionnaire survey was conducted from January 2017 to December 2018. The survey was performed through self-assessed, online, standardized questionnaires. Participants were informed about the survey through banners that were placed in Greek websites related to HS or when individuals were searching for specific terms in Google. The banners were setting questions such as “do you suffer from painful recurrent nodules in armpits or buttocks”. All respondents who clicked on these banners were redirected to the survey questionnaire, designed to filter out ineligible respondents.

Eligible respondents were those who were either diagnosed with HS or have presented symptoms that could indicate HS. No age, gender or area criteria were used. Methods are summarized in Figure 1.

Figure 1.

Summary of the materials and methods as a flowchart

Questionnaire

The questionnaire contained 39 open and close-ended items, incorporated into 5 sections [Supplementary material]. The first section (screener), containing 4 questions, assessed the disease's presence, based on description of the symptoms (onset, duration, coexistence of skin lesions, exacerbations). Participants were asked if the diagnosis had already been established. In case of patients with established or suspected HS, further epidemiological data were evaluated, such as gender, age, age at presentation of first symptoms, area of residence, smoking status, type of insurance, educational level, monthly household income and disease severity. Disease severity was determined based on objective findings such as the number of exacerbations and the presence of fistulas, as well as on subjective measures such as the impact of the disease on patients’ quality of life. The disease was classified as mild when the lesions were contained to one body area, there were 1-2 exacerbations per year, there was no fistula and the impact on quality of life was low. The disease was considered moderate when more than one body area was involved, there were 3-5 exacerbations per year, there were scars and the impact on quality of life was moderate. Finally, disease was classified as severe based on the presence of severe symptoms, frequent exacerbations, large scars and serious impact on quality of life. The disease severity was classified according to the Hurley classification.

The next section contained questions about any comorbidities (e.g. obesity, hypertension), medical consultations (specialties consulted and number of consultations before diagnosis was established), admissions to hospital, surgical treatment and effectiveness of antibiotics. In the last sections several aspects of patients’ perception for HS were investigated such as any possible causes of the skin lesions, the effectiveness of other treatment modalities, cost related issues, and the impact on their professional activities and their quality of life (social, personal, sexual, psychological condition).

Statistical analysis

Statistical analysis included descriptive statistics of the study population. Data are presented with mean values, standard deviations, median values and interquartile ranges for continuous variables such as age. Categorical variables, such as gender, comorbidities and treatment measures, are presented with frequencies and percentages. The Chi-square test was used for comparison of disease severity with regards to comorbidities and other variables. In order to assess the association of disease severity stage and certain variables such as age, sex, gender, body mass index (BMI), smoking, family history and comorbidities, ordered logistic regression was performed. Odds ratios (OR) derived from the ordered logistic regression models refer to the odds of being in a more severe rather than less severe stage of disease, and are shown with their 95% confidence intervals (CI) and the respective P values. Statistical analysis was carried out using the R software, version 3.5.2. For all the tests, a P < 0.05 indicates statistical significance

Results

Overall, 1301 Greek participants answered the questionnaire. There were 676 (51.9%) participants among them who reported symptoms indicative of HS such as “pimples, knobs, abscesses, cysts, fistulas or scars in areas such as armpits or buttocks, and those symptoms were constant or have worsened more than once in the past 6 months”. Among the 676 participants with symptoms indicative of HS, 253 (37.4%) participants had relatives with similar skin lesions, almost half of them (n = 307, 45.4%) had 2-4 times exacerbations during the last months, while 118 (17.4%) had constant symptoms during the last six months. Last there were 206 (30.4%) participants who had been already diagnosed with HS.

Demographics of diagnosed patients (n = 206)

The mean age of the study group was 39.2 ± 11.3 years [Table 1]. The majority of the diagnosed patients (n = 206) were females (n = 140, 68.0%) and active smokers (n = 124, 60.1%). Among the diagnosed patients, 136 patients (66.0%) had public insurance, 47 (22.8%) had private insurance, and 23 (11.1%) had no insurance at all. Also, 79 (38.3%) patients reported a positive family history for HS. Among patients with severe disease, 23 (45.0%) patients had received basic and secondary education, 22 (43.1%) received higher education, and 6 (11.7%) patients had a Master Degree and/or PhD. On the contrary, among those with mild disease, 24 (33.3%) patients had received basic and secondary education, 37 (51.3%) patients had higher education, and 11 (15.2%) patients had a Master Degree and/or PhD. Higher education was associated with milder disease (p = 0.042), probably because patients with higher education have better access to healthcare or seek treatment sooner than patients with lower education.

Table 1.

Demographics for the diagnosed patients (n=206)

Characteristics	Results
Age, years	39.2±11.3, 39 (32-48)
Male gender	66 (32.0)
BMI	27.7±7.0, 26.1 (22.4-32.5)
Active Smoking	124 (60.1)
Family history	79 (38.3)
Type of insurance
Public	136 (66.0)
Private	47 (22.8)
None	23 (11.1)
Education	Severe HS	Mild HS
Basic and secondary	23 (45.0)	24 (33.3)
Higher	22 (43.1)	37 (51.3)
Masters/PhD	6 (11.7)	11 (15.2)

BMI, Body Mass Index; HS, Hidradenitis Suppurutiva. Data are shown as mean±SD with median (interquartile range) or n (%) when appropriate

Age at onset, age at diagnosis and comorbidities (n = 206)

More than half of the diagnosed patients (n = 110, 53.3%) reported that their first symptoms presented at the age between 12 and 25 years old. The same percentage (53.5%) had a quick reaction to their symptoms and visited a doctor within the first two months of the development of their first symptoms. However, the mean age of onset disease was 25.9 ± 8.2 years, while the mean age of diagnosis was 30.3 ± 8.2 years indicating that the average delay between first symptoms and diagnosis was 4.4 years [Table 2]. Comorbidities included overweight/obesity in 68 (33.0%) patients, dyslipidemia in 25 (11.1%), depression in 27 (13.1%), hypertension in 16 (7.8%), diabetes mellitus in 12 (5.7%), thyroid disease in 24 (13.1%) and chronic inflammatory bowel disease in 7 (3.4%) patients [Table 3].

Table 2.

Disease characteristics for diagnosed patients (n=206)

Characteristics	Results
Age at disease onset, years	25.9±8.2, 27 (20-35)
Age at disease diagnosis, years	30.3±9.5, 32 (28-41)
Number of doctor visits before diagnosis
1-3	101 (49.0)
3-5	72 (34.9)
>6	33 (16.0)
Disease severity
Mild	72 (34.9)
Moderate	83 (40.2)
Severe	51 (24.7)
Location
Neck	19 (9.2)
Ears	29 (14.0)
Axilla	100 (48.5)
Palms	2 (0.9)
Chest	49 (23.7)
Abdomen	24 (11.6)
Genitals	120 (58.3)
Gluteal area	81 (39.3)
Femoral area	40 (19.4)
Feet	1 (0.4)
Conservative Τreatment
No mediation	111 (53.8)
Oral antibiotics	30 (14.5)
NSAIDs	47 (22.8)
Biologic factors	10 (4.8)
Isotretinoin	8 (2.9)
Surgical Τreatment
Νo surgical treatment	64 (31.0)
Incision/drainage	54 (26.2)
Local excision	62 (30.0)
Fistula removal	26 (12.6)

Data are shown as mean±SD with median (interquartile range) or n (%) when appropriate

Table 3.

Comorbidities for the diagnosed patients

Comorbidities	Overall	Mild disease	Moderate disease	Severe disease	P
Obesity	68 (33.0)	19 (9.2)	29 (14.1)	20 (9.7)	0.29
Depression	27 (13.1)	6 (3.1)	9 (4.5)	11 (5.5)	0.07
Thyroid disease	24 (11.6)	5 (2.4)	7 (3.4)	12 (5.8)	0.009
Inflammatory bowel diseases	7 (3.4)	2 (0.9)	3 (1.5)	2 (0.9)	0.93
Hypertension	16 (7.8)	5 (2.4)	4 (1.9)	8 (3.5)	0.07
Diabetes Mellitus	12 (5.7)	4 (1.9)	4 (1.9)	4 (1.9)	0.76
Dyslipidemia	25 (11.1)	8 (3.5)	12 (5.7)	4 (1.9)	0.50

Data are shown as n (%). The Chi-squared exact test was used for comparison of the variables between the severity groups

Disease severity (n = 206)

The majority of diagnosed patients (n = 83, 40.2%) reported symptoms indicative of moderate disease, whereas 72 (34.9%) patients reported mild disease and 51 (24.7%) patients reported severe disease [Table 2]. Thyroid diease was associated with a more severe stage of the disease (p = 0.009) as shown in Table 3. Patients who reported more frequent medical visits (4-10 times during the last six months, either visiting a doctor, an emergency room, being hospitalized and/or having undergone a surgical procedure) had also more severe symptoms (p = 0.012). Also, patients who reported involvement of the genital area (p = 0.001), gluteal area (p < 0.001), abdomen (p < 0.001), chest (p = 0.001) and axilla (p = 0.002) had more severe disease. Moreover, multivariable analysis demonstrated that among the various covariates, smoking (OR 4.29, 95% CI 2.35–7.84, P < 0.001), thyroid disease (OR 2.95, 95% CI 1.25–6.98, P = 0.013), BMI (OR 1.08; 95% CI 1.02–1.14, P = 0.005) and younger age (OR 0.96; 95% CI 0.94–0.99, P = 0.010) were associated with a more severe HS [Table 4].

Table 4.

Ordered logistic regression for severity disease as dependent variable adjusted for age, smoking status, gender, BMI, family history and comorbidities

Variables	OR1	95% CI	P
Age2	0.96	0.94-0.99	0.010
Gender	1.62	0.92-2.84	0.08
Smoking	4.29	2.35-7.84	<0.001
Family History	0.84	0.48-1.46	0.55
BMI3	1.08	1.02-1.14	0.005
Thyroid disease	2.95	1.25-6.98	0.013
Diabetes mellitus	0.74	0.20-2.66	0.65
Hypertension	2.82	0.94-8.50	0.06
Dyslipidemia	0.95	0.42-2.14	0.91
Inflammatory bowel disease	1.83	0.41-8.17	0.42
Depression	1.88	0.84-4.20	0.54

OR, odds ratio; CI, confidence interval. ¹The proportional ORs refer to the odds of being in a higher rather than lower category of disease severity. ²Per 1-year increase. ³Per 1 unit

Medical consultation (n = 206)

Of the 206 diagnosed HS patients, 175 (84.9%) patients consulted a dermatologist for their disease, 78 (37.8%) a general surgeon, 47 (22.8%) an internist, 25 (12.1%) a gynecologist, and 18 (8.7)% an infectious disease specialist. One hundred and nine (49%) patients visited a mean number of 1-3 doctors before diagnosis was established. More than one third of the patients (n = 72, 34.9%) visited 3-5 doctors and 33 (16.0%) patients visited six or more doctors before having their disease diagnosed [Table 2]. One hundred and forty-eight (71.8%) patients reported that the physician who made the diagnosis was a dermatologist and 107 (51.9%) patients reported that their current doctor is a dermatologist. However, 31 (15.0%) patients are being treated by a non-dermatologist doctor, and 68 (33.0%) patients reported that they were not followed up by any doctor.

Of the 206 diagnosed patients, 127 (61.6%) patients reported visits in an outpatient office and 60 (29.1%) in the emergency room (ER). Twenty two (10.6%) patients were hospitalized and 64 (31.0%) patients underwent a surgical procedure at least once during the past six months. This highlights the significant economic impact of this disease on the healthcare system of the country. Additionally, it was more commmon for active smokers (p = 0.016) and obese (p = 0.008) patients to visit the emergency room, being hospitalized or undergo a surgical procedure during the past six months,

Perceived possible causes of skin lesions (n = 206)

Interestingly, 53 (25.7%) of the 206 diagnosed patients believed that their symptoms were due to folliculitis caused by hair removal, 39 (18.9%) believed that their symptoms were due to skin irritation from tight or synthetic clothes/underwear, 35 (16.9%) due to skin irritation caused by razor and 27 (13.1%) patients believed that their symptoms were caused by follicular occlusion. One-fourth of the patients (n = 52, 25.2%) had no idea about any possible cause of their symptoms.

Current therapy and effectiveness (n = 206)

Among the diagnosed HS patients, 53.8% (n = 111) patients were under no medication, 14.5% (n = 30) were under oral antibiotics, 22.8% (n = 47) under nonsteroidal anti-inflammatory drugs (NSAIDS) and other analgesics, 4.8% (n = 10) under biologic treatments and 3.8% (n = 6) under isotretinoin [Table 2]. Thirty one (15.0%) patients reported that they are under the current treatment for more than five years.

Among the diagnosed patients who were under medications (n = 95), only 35.9% (n = 74) reported a better health status after receiving the treatment, while 14.0% (n = 29) reported worse health status after the onset of the treatment questioning its effectiveness. All the patients who received local cortisone injections reported worse health status after the injections. Treatment seemed to be more beneficial to younger patients, since 130 (26.7%) young patients reported better health status after the onset of the treatment, while 41 (19.9%) middle-aged (25-34) patients reported worse health status after treatment.

Regarding surgical treatment during the past six months, 54 (26.2%) patients underwent an incision or drainage of the affected area, 62 (30.0%) a local excision, and 26 (12.6%) patients had a fistula removal. Sixty-four (31.0%) patients reported that they had not undergone any surgical procedure during the last six months [Table 2].

Cost caused by patients (n = 206)

Among the 206 diagnosed patients, 124 (60.2%) patients reported daily use of antiseptics for superinfections, 115 (55.8%) daily use of gauzes or sanitary towels or elderly people's diapers, 45 (21.8%) patients used healing drugs for scars, while 70 (33.9%) patients reported that they had limited clothing options because they had to cover their scars with their clothes. This highlights the impact of the disease on their everyday life.

Impact on quality of life and profession (n = 206)

Among the diagnosed patients (n = 206), 99 (48.1%) patients reported that HS has a negative effect on their social life, 95 (46.1%) on personal life, 115 (55.8%) on sexual life, 163 (79.1%) on their mental health and 128 (62.1%) on their overall quality of life. Patients between 25-34 years and those with more severe symptoms were most affected regarding their social life (60.2% and 85.9%, respectively), personal life (55.8% and 85.9%, respectively) and sexual life (70.9% and 85.9%, respectively). On the other hand, younger patients (18-24 years old) reported to be the most affected regarding their mental health (in the astonishing percentage of almost 100%), followed by those with severe symptoms (98.1%). The worst quality of life was reported by patients with severe disease (89.8%), followed by younger patients (79.1%).

Regarding professional activities, 87 (42.2%) of the 206 diagnosed patients reported that HS has an significant negative impact on their job. Forty-one (19.9%) patients reported a negative impact on their income, while 33 (16%) patients reported that they are concerned about losing their job. Of those reporting negative impact on their job, the most affected were the middle-aged (25-34, 57.8%) and those with more severe symptoms (66.9%).

Discussion

To the best of the authors’ knowledge, this is the first study that qualitatively assessed Greek patients’ perception on HS regarding its treatment and quality of life, as well as on time- and cost-related issues associated with the disease.

We confirmed the findings of Calao et al.[6] that ”individuals living with HS identified through the screening questionnaire were more likely to be females, young, obese, smokers, unemployed or at home duties and having a lower annual personal income in comparison with non-HS individuals”. In our study, the mean interval between symptoms’ onset and diagnosis was more than four years, still shorter than that of most published studies. In a large multicentre study including 29 medical centers from all continents, the mean periods between symptoms’ onset and the first physician consultation or between symptoms’ onset and diagnosis were reported to be 2.3 and 7.2 years, respectively.[7] In another multinational survey from 14 countries a mean delay of 10.2 years was reported between symptoms’ onset and diagnosis.[8] Patients with thyroid disease reported a more severe stage of HS (p = 0.009). This finding is consistent with a recent study of our team, in which thyroid disease and active smoking were also associated with more severe HS.[9] A family history is also associated with a longer delay in diagnosis, probably indicating that HS is perceived as a ‘condition of life’, resulting in a delay for seeking medical evaluation.[7] Calao et al.[6] attributed the low diagnosis rate of HS among the Australian general population to the decentralization of care, lack of familiarity of some clinicians to the disease, and the fact that patients do not usually seek medical help for single or infrequently recurring boils.

Even though the longest delay to treatment has been reported among patients with more severe disease,[7] more than half of the patients in our survey consulted a physician within the first two months after symptoms’ presentation. Prompt consultation seems to be associated with a better treatment response. In line with this, treatment is not very effective in patients with more severe symptoms. This emphasizes the necessity for prompt evaluation treatment, which may alter the course of the disease.

Overall, dermatologists play an important role in the diagnosis and treatment of HS. In our study 85% of the patients had consulted a dermatologist, and the diagnosis was made by a dermatologist in more than 70% of the cases (compared to 50% in other series).[6] In line with the existing literature,[6] we also found that one third of the patients had consulted five doctors for their condition before a definite diagnosis was made. While the majority of patients (52%) reported that they were followed-up by a dermatologist, one third did not have continuation of their medical care and were not followed-up by any doctor. These findings may reflect an overall disappointment from the provided medical care. According to other studies, more than one third of patients report that access to a dermatologist is difficult or very difficult 8.[9] In the US, only one out of five HS patients have an established relationship with a dermatologist,[10] although there is an increased utilization of high-cost settings such as the emergency department (ED) and inpatient care,[11] as in our study.

In our study, one-fourth of the already diagnosed patients claimed to be unaware of basic knowledge of the disease and were totally confused about its pathophysiological origin. This emphasizes the necessity for better education about the disease. Pavon Blanco et al.[12] recommended that future research should include patients’ beliefs about the causes of HS as it is one of the most modifiable illness perceptions.

Moreover, only 20% of our patients reported health improvement after receiving therapy, indicating medium treatment effectiveness. Large cohorts have also reported high dissatisfaction rates regarding medications and treatment modalities (47% and 35%, respectively).[8]

We confirmed the association between HS and educational status, since patients with higher educational status seemed to report a milder disease. This finding may be due to the fact that these patients have better and quicker access to medical care or because they are more compliant to the treatment. Although low socioeconomic status (SES)[13,14] is common in HS patients, low SES may also be a result of the disease due to inability to acquire or maintain gainful employment.[10]

Finally, HS has a detrimental impact on professional activities, sexual life, mental health and quality of life of the patients. The association between disease severity and anxiety, depression, loneliness and social isolation has been well-documented.[2,3] Two-thirds of our patients reported a very low quality of life. According to published data, 43% of patients report a significant impact on their life, whereas 14.5% report that they are disabled due to HS.[8] However, large cohorts have confirmed the lack of association between people's illness beliefs and their disease severity.[12]

There are some limitations of the study that must be addressed. First, diagnosis of HS was made by dermatologists and non-dermatologist physicians, which can result in suboptimal diagnosis in certain cases. However, diagnosis of HS is based on criteria and guidelines released by international scientific societies and given that the disease is more commonly diagnosed nowadays, dermatologists and non-dermatologists physicians are becoming more familiar with the disease. Therefore, it is becoming a common practice for HS to be diagnosed by non dermatologist physicians as well. Second, although it would be interesting and valuable to investigate the knowledge and perception of HS among non-patients or suspected patients, the study was not designed to collect such data therefore non-patients’ or suspected patients’ perception of HS cannot be reported. This can be investigated in a future study.

Similar to other chronic diseases such as psoriasis and eczema, HS is a time-consuming and cost-intensive disease. There are indications that HS is an undertreated disease since a considerable dissatisfaction was reported by the patients who feel that their disease is not managed and controlled appropriately, even though they spend considerable time and effort for their treatment. An earlier diagnosis of the disease, better education of the patients, better education of the doctors and more effective treatments seem to be absolutely necessary for the confrontation of the disease. Although extensive research has been conducted evaluating the efficacy of several different medications and modalities such as biologic agents and laser therapy for the treatment of HS, further randomized clinical trials are needed to establish the most efficient therapy for this disease.

Financial support and sponsorship

The “Abbvie Pharmaceuticals” S.A. of Greece supported financially the conduction of the statistical analysis by “Alternative Research Solutions” S.A.

Conflicts of interest

There are no conflicts of interest.

Supplementary Material

SCREENER

S1. In the past 6 months, have you presented any pimples, knobs, abscesses, cysts, fistulas or scars in one of the following parts of your body?

□ Armpits

□ Buttocks

□ Genital organs’ area

□ Soles

□ Nape

□ Behind the ears

□ Palms

□ Hairy part of the head

□ Thighs

□ Below the chest

□ Other _______ (please specify)

□ None of the above have appeared on me in the last 6 months

IF ONLY ANSWERS THAT ARE RED, THEN NOT SUITABLE, THANK YOU.

S2. In the past 6 months, on how many occasions did you present exacerbations of pimples, knobs, abscesses, cysts, fistulas or scars in one or more parts of your body?

□ ___ times during the last 6 months

□ My symptoms are constant and do not recede

*With the term exacerbation we mean every time that your cutaneous lesions worsen or new lesions present.

S3. Do you have any relatives that have presented/ present similar cutaneous lesions?

□ YES

□ NO

S4. Have you been diagnosed by a doctor with hidradenitis, hidradenitis suppurativa or acne inversa?

□ YES

□ NO

End call if:

• S1= ONLY PALMS or/ and PALMS or NONE OF THE ABOVE HAVE APPEARED IN THE LAST 6 MONTHS

• OR S2= <2 has not chosen the box «My symptoms are constant and do not recede»

• AND S4=NO. (meaning, if S4=YES proceed independently of what was previously answered)

Closing message: Thank you for your participation. From what you answered you do not seem to suffer from hidradenitis suppurativa. In any case, we suggest that you consult a dermatologist.

Part 1 – DIAGNOSTIC DATA

EVERYONE

1. From what you recall, at what age did your symptoms first appear?

____

2. From what you remember, how long did you wait from the time the first symptoms appeared, until you visited a health professional for your problem?

□ I did not wait, I went immediately

□ A few weeks

□ 1-2 months

□ 3-6 months

□ 6-12 months

□ 1-2 years

□ More than 2 years

□ I have not visited any health professional

3. What kind of health professional did you visit? (multiple options acceptable)

□ Pharmacist

□ General doctor

□ Internist

□ General Surgeon

□ Plastic surgeon

□ Gynecologist

□ Infectious disease specialist

□ Endocrinologist

□ Dermatologist

□ Other _____

If S4=YES

4. From what you recall, at what age were you diagnosed with hidradenitis suppurativa?

____

5. From what you recall, how many doctors did you visit from the moment your first symptoms appeared until you were actually diagnosed?

____

6. What was the specialty of the doctor that finally made the diagnosis? (multiple answers available)

□ General doctor

□ Internist

□ General surgeon

□ Plastic surgeon

□ Gynecologist

□ Infectious disease specialist

□ Endocrinologist

□ Dermatologist

□ Other _____

EVERYONE

7. Of what specialty is your current doctor?

□ General doctor

□ Internist

□ General surgeon

□ Plastic surgeon

□ Gynecologist

□ Infectious disease specialist

□ Endocrinologist

□ Dermatologist

□ Other _____

□ No doctor is watching my case

8. Have you ever visited a dermatologist?

□ YES

□ NO

9. If yes, who referred you to him?

□ Pharmacist

□ General doctor

□ Internist

□ General surgeon

□ Plastic surgeon

□ Gynecologist

□ Infectious disease specialist

□ Endocrinologist

□ Other _____

□ No one referred me to him, I took the initiative to go

EVERYONE

10. Of what importance are the cutaneous lesions you are facing today?

□ Mild: In one area of the body, 1-2 exacerbations/ year, there are no, syringes, low impact to the quality of life

□ Medium: In more than one areas of the body, 3-5 exacerbations/ year, shaping of scars, medium impact to the quality of life

□ Important: Extensive symptoms, frequent exacerbations, large scars, serious impact to the quality of life

11. Where do you render your cutaneous lesions? (multiple answers acceptable)

□ Clogged pores from the use of deodorant

□ Irritation from the use of razor

□ Bursitis that occurred from waxing

□ Narrow/ synthetic clothes/ underwear

□ Autoimmune/ Autoinflammatory disease

□ I do not know

12. If you know that you suffer from another chronic disease, please mention it:

□ Diabetes

□ Hyperlipidemia (cholesterol)

□ Arterial hypertension (blood pressure)

□ Overweight or Obese (BMI: Weight / height² > 25 Kgr / m²)

□ Ulcerative colitis

□ Crohn disease

□ Depression

□ Other _____

Part 2 – TREATMENT AND USE OF RESOURCES

13. Do you currently use any of the following medication for your disease? (multiple answers acceptable)

□ Analgesics (e.g. Depon, Panadol etc.)

□ Nonsteroidal anti-inflammatory drugs (e.g. Mesulid, Neurofen, Ponstan, Voltaren, Algofren etc.)

□ Antibiotics in cream form for local use (e.g. Dalacin)

□ Antibiotics for oral use (e.g. Augmentin, Klaricid, Ceclor, Rifadin, Rifina, Dianicotyl, Dalacin ?.a.)

□ Biological treatment (e.g. Humira, Enbrel, Infliximab, Kineret ?.a.)

□ Cortisone/ Steroids for oral use (e.g. Medrol, Prezolon ?.a.)

□ Cortisone injection locally or intramuscularly (e.g. Propiochrom, Celeston Chronodose)

□ Acitretin (e.g. Neotigason)

□ Isotretinoin (e.g. Accurane, Reducar, Tretin, Roaccutan, Acnotren κ.α)

□ Phototherapy (e.g. PUVA, UVB)

□ Other ................. (please specify)

□ I do not know

□ I am not receiving any medication

14. For how long have you been on the same medical prescription?

□ Less than 6 months

□ 7-12 months

□ 1-2 years

□ 2-5 years

□ More than 5 years

□ I do not recall

15. In the past, have you used any of the following drugs for your disease? (Multiple answers acceptable)

□ Analgesics (e.g. Depon, Panadol etc.)

□ Nonsteroidal anti-inflammatory drugs (e.g. Mesulid, Neurofen, Ponstan, Voltaren, Algofren etc.)

□ Antibiotics in cream form for local use (e.g. Dalacin)

□ Antibiotics for oral use (e.g. Augmentin, Klaricid, Ceclor, Rifadin, Rifina, Dianicotyl, Dalacin ?.a.)

□ Biological treatment (e.g. Humira, Enbrel, Infliximab, Kineret ?.a.)

□ Cortisone/ Steroids for oral use (e.g. Medrol, Prezolon ?.a.)

□ Cortisone injection locally or intramuscularly (e.g. Propiochrom, Celeston Chronodose)

□ Acitretin (e.g. Neotigason)

□ Isotretinoin (e.g. Accurane, Reducar, Tretin, Roaccutan, Acnotren κ.α)

□ Phototherapy (e.g. PUVA, UVB)

□ Other .................... (please specify)

□ I do not know

□ I am not receiving any medication

16. Have you ever been submitted to any of the following surgical procedures to cope with your disease?

□ Spooling or opening of cutaneous lesion (e.g. abscess)

□ Local excision (e.g. abscess removal)

□ Syringe removal (deroofing)

□ Widespread spooling (e.g. removal of all the skin that suffers in one area)

□ Other ................ (please specify)

□ I have not been submitted to any surgical procedures

□ I do not know/ Do not answer

17. Have you ever used any of the following to cope with your disease?

□ Gauzes, sanitary towels or diapers for elderly people for purulent secretions

□ Talc for purulent secretions

□ Aroma for stench

□ Antiseptics for the superinfections

□ Healing drugs for scars

□ Clothes to cover the scars

□ Other.......for........ (please specify)

18. From what you recall, how many times during the last 6 months...?

PART 3 – QUALITY OF LIFE AND EMPLOYMENT

Imagine that the following scale represents how you feel concerning your health due to your disease. 10 represents the best health condition in which you can think yourself into and 1, the worst.

19. How would you describe your level of health today?

20. What is your current level of the following symptoms?

If 14 ≠ «Do not take any medication»

21. How would you describe your level of health before you started your current pharmaceutical treatment?

22. What was the level of the following symptoms, before you started your current pharmaceutical treatment?

23. Using a scale from 5 to 1, where 5 means that you totally agree and 1 that you totally disagree, I would like you to tell me how much do you agree or disagree with each phrase. You can use any level in between.

24. How important do you find the contribution of your current pharmaceutical prescription in managing to keep your job?

PART 4 – GENERAL INFORMATION

Please choose the options that describe you the most or fill out the following questions:

25. Gender

□ Male

□ Female

26. Age

____

27. Weight

____

28. Height

____

29. Smoking

□ Non-smoker

□ Smoker

□ Ex-smoker

30. Area of Residence

____

31. Education

□ Mandatory

□ High school

□ Professional school

□ University

□ Master

□ PhD

32. Working Condition

□ Working with payment

□ Working without payment

□ Retired

□ Student

□ Household

□ Unemployed

□ Do not know/ No answer

33. Level of monthly household income

□ Up to 500€

□ from 501 to 1.000 €

□ from 1.001 to 1.500 €

□ from 1.501 to 2.000 €

□ from 2.001 to 2.500 €

□ from 2.501 € and above

34. Current insurance condition (If privately insured, more than one acceptable answers)

□ Publically insured

□ Privately insured

□ Not insured

□ Welfare booklet

35. After the completion of this survey, do you intend to visit a dermatologist for your condition?

□ YES

□ NO

□ A dermatologist is watching my case

END

EVERYONE

Thank you very much for your participation!

Undiagnosed (meaning S4=NO)

Your symptoms might have to do with a chronic, non-contagious, inflammatory disease of the skin, hidradenitis suppurativa, for this reason we advise you to consult a dermatologist as soon as possible

Diagnosed people who do not consult a dermatologist (meaning S4=YES and 7≠Dermatologist)

Hidradenitis suppurativa is a chronic, non-contagious, inflammatory disease of the skin, for this reason we advise you to consult a dermatologist as soon as possible

	Once	2-3 times	4-6 times	7-10 times	11-14 times	15+ times	Never/ No times	Do not remember
Did you visit the clinic of the doctor that follows your case
Did you visit an emergency department (clinic, hospital, etc.) without an appointment for your disease
Were you submitted to any surgical procedures for your disease
Were you hospitalized for your disease

1= Worst health condition									10 = Best health condition
1	2	3	4	5	6	7	8	9	10

	1= Worst health condition (e.g. too much pain)									10 = Best health condition (e.g. no pain)
Pain	1	2	3	4	5	6	7	8	9	10
Pyorrhea (pus)	1	2	3	4	5	6	7	8	9	10
Stench	1	2	3	4	5	6	7	8	9	10
Scars	1	2	3	4	5	6	7	8	9	10

1= Worst health condition									10 = Best health condition
1	2	3	4	5	6	7	8	9	10

	1= Worst health condition (e.g. too much pain)									10 = Best health condition (e.g. no pain)
Pain	1	2	3	4	5	6	7	8	9	10
Pyorrhea (pus)	1	2	3	4	5	6	7	8	9	10
Stench	1	2	3	4	5	6	7	8	9	10
Scars	1	2	3	4	5	6	7	8	9	10

	5- Totally agree	4- Agree	3- Do not agree nor disagree	2- Disagree	1- Totally disagree
My disease has an effect on my social life (e.g. hobbies, friendships, travels etc.)
My disease has an effect on my personal life (e.g. family situation)
My disease has an effect on my sexual life
My disease has an effect on my psychology
My disease has an effect on my quality of life in general
My disease has an effect on my job
My earnings have decreased due to my disease
I am afraid that I might lose my job, due to my disease

Highly important	5
Very important	4
Neither important nor non-important	3
Slightly important	2
Not important	1
Does not apply because I do not take any medication	0