INTRODUCTION

Hidradenitis suppurativa (HS) is a chronic, inflammatory skin disease of unknown etiology that causes sudden eruptions of intensely sore nodules and abscesses that result in scars and dyspigmentation.1 It is a recurring disease that begins after puberty and has a diagnosis period of approximately 13 years. The abscesses, nodules, or cysts typically appear in the armpits, groin, around the buttocks, and under the breasts.2 Fistulization can occur as a result of the development and opening of abscesses, causing an odorous purulent discharge. Scars develop in the affected areas, which heal by themselves or after treatment.3,4

All aspects of a patient’s life and psychosocial development can be affected by HS due to the constant pain, odor, and restriction of movement from the abscesses. Patients with HS may be left out of physical activities and unable to form sexual relationships. It is important that providers offer psychological support alongside dermatologic treatment for these patients. By taking a whole-person perspective and considering the individuality of each patient, providers can make an inclusive and detailed assessment to determine individual needs and provide specialized support. A qualitative research process that provides detailed assessment is a useful method for approaches that will be individualized.

Many quantitative studies have shown that patients with HS experience pain, depression, a reduction in quality of life, difficulty in maintaining employment, and difficulty in relationships. The present study provides a different viewpoint by taking into account the experiences, difficulties, and depth of psychological problems of patients with HS through one-on-one interviews. The aim of the study is to present a holistic picture of patients’ experiences and psychosocial effects of the disease.

METHODS Design and Participants

The study used a phenomenologic approach, a qualitative research method that aims to understand meanings ascribed to the lifestyles of people or groups, their histories, behaviors, organizational structures, and problems.5 Researchers selected this study design to better understand the difficulties, experiences, and psychological problems experienced by individuals with HS.

Participants were recruited via purposive sampling. Patients with HS who applied to the dermatology outpatient clinic for disease management between July 2020 and January 2021 were invited to participate. The inclusion criterion was a diagnosis of HS, and the exclusion criteria were a physical or mental condition hindering communication and/or a major mental disorder that could seriously affect thoughts or feelings.

Data Collection and Procedures

Data were collected via in-depth, face-to-face interviews using a semistructured interview form consisting of 11 questions. All interviews were conducted individually and took place in the researcher’s room in the clinic, which is a private, quiet, and safe environment. Interviews ranged in duration from 26 to 81 minutes and were audio recorded, with the patient’s permission. Interviews persisted until saturation of data.5,6 One of the interviewers is a psychiatrist, and the other is a psychiatric nurse with a PhD. All data were treated confidentially, and no names are used in the documents.

At the beginning of the interview, the researcher first obtained demographic information about the patient: age, sex, marital status, profession, cohabitants, and comorbidities. Then, the interviewer examined their experiences with HS by asking open-ended questions such as: “Can you explain how the illness has affected your life?” “What does this illness make you feel?” and “In what way does your illness affect you psychologically or mentally?”

Data Analysis

Within 2 days of each interview, the second researcher transcribed the audio recording verbatim, also noting details of the interviewees’ emotions, pauses, and modal words.

The data were transferred to the analysis program Maxqda-Plus (VERBI GmbH) for interpretative phenomenological analysis. The analysis included (1) rereading, (2) preliminary annotation and analysis, (3) developing themes, (4) searching for connections across themes, (5) analyzing the next case, (6) seeking patterns across cases, and (7) moving the interpretation to a deeper level.7

A researcher not involved in the research process evaluated the study process and products to evaluate whether the findings, interpretations, and conclusions are supported by the data. Any differences in opinion were discussed, and a joint decision was made regarding the codes. Numerous perspectives and powerful participant expressions were used to bolster the reliability of the data. When the researchers offered many perspectives about a theme, the results became more realistic and richer.

Ethics

All procedures performed in this study were in accordance with the ethical standards of the local ethics committee of the medical school (22.07.2020/20.478.486/463) and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Participants provided verbal and written consent for participation after being informed about the study.

RESULTS

A total of 10 individuals with HS participated in this study. The Table details the participant characteristics; all participants had sufficient disease and treatment knowledge. The interpretative phenomenologic analysis of participant interviews revealed two main themes: “unending symptoms” and “life becoming hard.”

Table - PARTICIPANT CHARACTERISTICS Patient No. Sex Age, y Marital Status Profession Cohabitants Smoking, Cigarettes per d (y) Alcohol Intake, Drinks per d or wk (y) Diagnosis Duration, y Regular Treatment Chronic Illness HS Location P1 Male 43 Single Engineer Mother, father 22 (25) Social drinker 4 Yes No Dorsal P2 Male 33 Married Employee Spouse No No 10 Yes Ankylosing spondylitis Axilla P3 Female 35 Married Not working Spouse, children 20 (18) Social drinker 7 Yes No Gluteal P4 Male 40 Married Self-employed Spouse 20 (20) Social drinker 1 Yes No Axilla, thigh, inguinal P5 Female 48 Married Engineer Spouse, child 30 (31) Beer, 3–4/d (10) 15 Yes No Gluteal, thigh P6 Male 51 Married Retired Spouse, child 20 (38) Raki, 5 double/d
(38) 10 Yes DM, HT, high cholesterol Axilla, inguinal P7 Male 41 Married Teacher Spouse, children No No 1 Yes No Scrotum P8 Male 32 Married Employee Spouse No No 10 Yes Ankylosing spondylitis Axilla P9 Male 40 Married Chauffeur Spouse, children 8 (20) No 16 Yes Thalassemia Axilla, thigh, gluteal P10 Male 23 Single Self-employed Father, stepmother, brother 20 (8) Beer, 3/wk (8) 2 No No Gluteal

Abbreviations: DM, diabetes mellitus; HS, hidradenitis suppurativa; HT, hypertension.

Unending Symptoms

When the participants described their symptoms, they focused on the abscesses, mentioning pain, odor, itching, and a sense of loss of bodily integrity.

“The pustules are gross, there’s something on your body, like it’s stuck to you. Like spaghetti, twisting and turning…” (P1)

“They’re bigger than a pimple, like a boil. The discharge and the smell are very disturbing…” (P3)

“There’s constant inflammation, and when they don’t empty, they hurt.” (P7)

“There’s always an infection, an infection full of blood, and there’s a smell… and it looks very bad.” (P4)

“They smell a lot; a strong smell comes from my sweat glands. It’s like a barn.” (P8)

“When (the abscess) empties, the skin above it loses its qualities, its wrinkles and dries up and starts to crust over. At those times it itches very badly… because of the cuts of lots of operations, there’s tissue loss, black spots, and the skin looks bad.” (P5)

“The appearance is very disturbing, purple like a piece of rotting meat.” (P9)

“It’s distressing, you don’t want to look at it. Even if it bursts, the disfiguration of the skin remains.” (P10)

The presence and recurrence of symptoms, the localization of abscesses and disruption of bodily integrity, the idea they might infect others, and the belief that treatment was ineffective all had negative effects on bodily perception in the participants and caused feelings of anxiety, fear, hopelessness, shame, worry, and sadness.

“Like a terrible person, like an animal… I don’t like myself, so what can I give to anyone else?” (P1)

“I could smell it myself; if it went to my wife and she got upset by it, I’d be even more upset.” (P3)

“When I smell that smell, I remember that I hate myself.” (P4)

“I don’t want to come because I have no hope. I stayed in hospital for 21 days. At that time, I was as free as a bird, I could move around freely, and I was very comfortable, but a week later it was the same thing, it all flared up again in the same way.” (P9)

“I don’t see a bright future for myself. It keeps on breaking out, first on the left then on the right, it’s always there where I sit, in my groin. Every year it comes out somewhere.” (P9)

“If it bursts, I’m ashamed. The fear of it hasn’t left me.” (P10)

The participants described how HS had a negative effect on their activities of daily living and their quality of life. The disrupted bodily integrity, pain, odor, and presence and sudden bursting of abscesses negatively impacted participants’ social lives, family lives, sexual lives, professional performance, and activities of daily living.

“You can’t make a sudden movement, you can’t get up quickly, you can’t walk; it gives you a pain, a pricking, discomfort.” (P1)

“For example, it’s very difficult to shave that area. When there’s pain, it prevents me from moving.” (P2)

“I feel pain when getting up and sitting down. Some things are forbidden, like when you’re having sex, you shouldn’t touch it. Also, when it comes out in the underwear area, I can’t wear underwear, and I can’t not wear it. I didn’t go out of the house just because I didn’t want to wear underwear.” (P3)

“Sometimes I can’t sleep, I can’t sit down, and I remember standing screaming in the middle of the street because that lesion is sticking to something, and I can’t walk… I can’t plan my life in any way. Also, my work is in the fields, I have to walk, and sometimes I can’t even take one step.” (P5)

“I can’t have sex when I want it. I want it, then I think it’s not possible because of the pain and the fear of passing it on.” (P6)

“My quality of life is zero. My child says let’s play, but I can’t play, and I always want to lie down… I go into class (as a teacher), there’s pain in that area, and I need to touch that area with my hand, but just think, I’m in class. There have been days when I wasn’t able to go to work, and I took sick leave.” (P7)

“I try not to get too close to my friends because of the smell.” (P9)

Life Becoming Hard

Participants noted that their lives started to change when the abscesses first appeared. They talked about spending many years without a diagnosis, visits to hospital seeing general surgery specialists and dermatologists, undergoing operations, the effects of medication, the search for a solution, and interventions.

For some participants, diagnosis took as long as 10 years. When describing the beginning of the disease, the participants noted that it started with a small pimple, which they had not attached much importance to at first, and they had gone to the hospital when the pain started. Many of the participants had first gone to the surgery department and had undergone a series of operations. When the abscesses recurred, they had gone to various departments. However, for many participants it took a long time to get a correct diagnosis in part because when the disease was in remission, they stopped the diagnostic process and did not go to the hospital.

“Wherever I went they didn’t find anything, and after a time I got fed up with it. I was sent to urology even; I went here, and I went there and there was nothing; I went to eyes, nephrology, and I’m healthy.” (P1)

“Before, they just gave me medication to dry it up and sent me away. They couldn’t diagnose it.” (P2)

“I went to the doctor five or six times, but nobody mentioned hidradenitis to me. In fact, the first one to say that wasn’t in dermatology but in general surgery.” (P3)

“We kept on saying it was a skin problem and putting it off. I went to five or six doctors. Nobody said to me your illness is this, you have to go to that department.” (P4)

Before the participants were diagnosed with HS, many underwent a series of operations to drain the abscesses. After diagnosis, medication (typically antibiotics) did not cure the disease, and they had further surgery because the disruption of tissue integrity was at a very advanced stage. Participants stated that they thought the illness would end after surgery, and when the abscesses recurred, they experienced disappointment.

“The doctor said we’re going to do a little operation. He made a cut and took out the inflammation, but with eight months of coming and going, it didn’t clear up. That infection in my groin was weeping constantly. I said when will this finish, and he said we’ll give you another operation.” (P4)

“I had a doctor, and I had the first operation with him, then the operations went on and on. Still no diagnosis had been made. I had a whole lot of operations: when one finished, another one started.” (P5)

“Last year, I had a big operation. My whole armpit was taken out and replaced with skin from my shoulder by plastic surgery.” (P6)

Participants also described how the medicines they used had significant effects on their lives. Along with mentioning the therapeutic effects of the drugs, they expressed worries about adverse effects.

“The first day I had the injection. In the morning when I got up, I couldn’t move my left leg, and there was a strong burning sensation there. It hurt; I couldn’t lie on it or sit on it.” (P1)

“It was a drug that wasn’t used very much. There were a lot of side effects in the prospectus. I didn’t want to use it, and when I didn’t use it, it caused another recurrence. Now, yes, it is beneficial, I don’t get the inflammation, and even though I’m afraid, I go on using it. Now the only thing is that on the days when I have the injection, I’m careful: I try not to go out or to go into very crowded places.” (P3)

The sudden bursting of the abscesses during daily life, the routine weeping, the smell, and the pain led many participants to search for their own solutions. These included using pomade, baby powder, olive oil, or centaury oil; wearing dark-colored clothing; regularly cleaning the affected area; using a hygienic pad or a paper napkin; changing underwear during the day; cleaning with sulfur soap; using leeches; cupping; and taking painkillers.

“When there was discharge, I wore dark colored clothes. I used to put eye pomades over it.” (P3)

“I’ve been using a pad for two or three years.” (P4)

“I used to use a bandage but that stuck more. Now I put moisturizer on a cotton pad, and I use an antibiotic cream.” (P5)

“I change my underwear three times a day. When I take it off, I go in the bathroom, I change my underwear and I place tissues. For example, sulfur soap was good, and I always used it for cleaning. It reduced the discharge and allowed me to move more comfortably.” (P6)

“When I woke up in pain at night, I used to take a pain killer.” (P8)

DISCUSSION

Under the first theme, “unending symptoms,” participants described experiencing abscesses, pus, pain, odor, itching, and disruption of bodily integrity. Similarly, in previous research, participants with HS have described pain,1,2,8 abscesses,9 pus,1,9 odor,1,9 itching,8 and disruption of bodily integrity.8 These symptoms caused difficulties with physical activity, wearing clothes, personal care, their sex life, and their professional life.1,8,10 In the present study, participants similarly stated that their symptoms disrupted their quality of life: They could not walk, they could not wear the clothes they preferred, they could not carry out personal care, their sexual lives were restricted, they could not spend time with their children, their work performance declined, and they could not meet with their friends.

Studies have shown that HS has negative physical and psychological effects on patients’ quality of life.7,10–12 Participant statements show that HS causes negative self-perception, worry, fear, hopelessness, shame, and unhappiness. Levels of depression and anxiety are higher among patients with HS than in healthy individuals.13 The symptoms of HS lead to hopelessness, anxiety that the lesions will be seen, shame, negative self-esteem, a negative body image, and fear of negative assessment, leading to social withdrawal and self-stigmatization.8,2,14 When patients have a heavy malodorous discharge, they tend to stay home and try to hide the affected areas and disfiguring scars by wearing long-sleeved blouses, trousers, or long shorts. The malodorous discharge, scars, unexpected bursting of abscesses, and lack of control over the disease have significant psychosocial effects in patients with HS and are frequently a source of shame, low self-esteem, social stigmatization, and hindrances to interpersonal relations.11,15 The participants in the present study took similar precautions and also experienced social withdrawal.

Hidradenitis suppurativa can affect all aspects of a patient’s life and cause negative emotions (eg, dislike, disgust, fear, shame, anger) and psychological symptoms. As a result, these patients need psychologically adapted care, termed “psychodermatology,” because the skin, nervous system, and mind are simultaneously affected with HS.

Two different levels have been identified in the psychodermatologic process. The first level is managed by well-informed dermatologists, and there is no request for psychological change. The dermatologist should have strong communication skills, knowledge about psychopharmacology, and the ability to recognize and refer patients needing psychological help. The second level is managed by a dermatologist and psychotherapist working together or by a dermatologist who is a recognized psychotherapist; psychological change is a goal. There are special requirements to practice psychotherapy as a psychodermatologist, and to work on this second level (counseling or psychotherapy), training in psychotherapy is needed. However, if a dermatologist is not ready to attain a certificate for psychotherapy, they should work in a team with a psychotherapist.16,17

In the second theme, “life becoming hard,” the participants talked about the long time to diagnosis, the innumerable hospital visits, the ineffective operations, the effects of treatment, and their worries about adverse effects.

Misdiagnosis and delayed diagnosis are often seen in patients with HS.18 Some studies have found that the disease is diagnosed an average of 7 to 14 years after the appearance of the first symptoms.14,19,20 In the present study, participants reported that this process took up to 10 years. Because HS is rare, physicians may lack adequate knowledge to diagnose it. Further, individuals may go to departments other than dermatology or discontinue searching for a diagnosis during periods of remission, both of which may increase the time to diagnosis.

Treatment for HS is very complex. Guidelines recommend that HS be treated based on the subjective impact and objective severity of the disease. Locally recurring lesions can be treated by classic surgery (excision or curettage of lesions) or laser techniques (carbon dioxide laser therapy, Nd:YAG [neodymium-doped yttrium aluminum garnet] laser therapy). Medical treatment (antibiotics, acitretin, and biologics) either as monotherapy (cyclosporin A) or in combination with radical surgery (primary closure, grafts) is more appropriate for widespread lesions.21 With the current treatment options, only approximately one in three patients is in remission, despite treatment. Nearly half of patients are dissatisfied with unwanted adverse effects of treatment,14 such as diarrhea, nausea, dizziness, glossodynia, vulvovaginal candidiasis, nephrotoxicity, hypertension, and an increased risk of malignancy. A substantial number of patients interrupt treatment because of these adverse effects.21 Participants in the current study described halting drug use because of worries about adverse effects, even though they were deriving benefit from the treatment.

Participants also settled on their own solutions to cope with symptoms. Other studies reported similar strategies among participants, such as the use of lotion, changing underwear,1 using analgesic drugs, using alternative medicine, taking frequent showers,8 using antiseptic cloths, and wearing loose clothing.15

Limitations

One limitation of the study is that each participant was interviewed only once, rather than followed up with long-term. Further, findings cannot be generalized because the participants are not necessarily representative of the population of patients with HS as a whole.

CONCLUSIONS

Overall, HS has a profound impact on patients’ quality of life.8 The symptoms of HS negatively affect individuals’ family life, professional performance, and activities of daily living. Because of the resulting negative emotions and psychological effects, patients with HS may benefit from psychiatric intervention. Providers should offer these patients interventions such as psychiatric counseling, psychiatric consultation, or referral to psychiatric services. The most effective strategy may be a psychodermatologic service in which patients are treated holistically.16,17,22

In developing psychological interventions for HS, the findings of this study suggest that it would be useful to address patients’ feelings of worry, fear, hopelessness, shame, and unhappiness. Approaches aimed at reducing an individual’s negative self-perception may accord with the psychological needs of individuals with HS.

Education programs for patients and providers may also be beneficial for increasing awareness of HS and decreasing time to diagnosis. The authors further recommend that longitudinal research be conducted with two or more interviews per participant to gain a more complete assessing of the participants’ experiences over time. Moreover, interviews with patients’ families/friends would likely yield more information about experiences of HS.