A qualitative study of hidradenitis suppurativa: Scars matter, not just active disease

To the Editor

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. HS has a predilection for the skin folds, so walking, sitting, and working difficult or impossible.¹ Multiple studies have investigated the effects of HS symptoms, such as odor, pruritus and pain on quality of life (QOL).^2,3 Existing studies have not investigated what portion of symptoms and limitations may be due to disease damage, distinct from active HS lesions. This is important since scars from procedures or due to an inflammatory disease can also be an important source of symptoms, separate from the active lesions.^4–6 Brown et al. showed that patients with non-visible scars experienced greater psychosocial distress than patients with visible scars, which is especially apropos for HS patients.⁴ The objective of this study was to explore HS patients’ experiences with symptoms, especially focusing on symptoms related to areas of damage.

Methods

Patients evaluated in the Department of Dermatology with a recorded diagnosis of HS and fluent in English were recruited in June 2015. Interviews were performed in-person by one interviewer (JSK) in July and August 2015. After giving verbal consent, semi-structured interviews were performed using an interview guide (Table 1), which allowed for topic consistency and flexibility. All the interviews were tape-recorded and transcribed verbatim. Transcripts were reviewed line-by-line after each interview and words, phrases and passages related to the symptoms and restrictions were coded using NVivo 10 (QSR International, Burlington MA). These codes were used to inform subsequent interviews. Preliminary codes were reviewed, then the final analytical codes were applied and grouped into themes. Thematic saturation, the point when no further new themes were identified, was reached by the sixteenth interview. This study was approved by the institutional review board of the Penn State College of Medicine.

Table 1.

Examples of the questions used during interviews with participants

What bothers you the most about your HS?	Do you sometimes notice skin changes where you have HS (or had HS)?
Please tell me the major ways in which HS affects your life.	How much do the scars and other skin changes both you?
Does your HS get in the way of relationships with other people?	Do the marks from the HS get in the way of your activities or relationships?

Results

A total of 21 patients participated (16 females [76.2%], 5 males [23.8%]); mean age 46.8 (standard deviation [SD] 13.7) years; with various ethnicities (13 Non-Hispanic White [61.9%], 3 Hispanic [14.3%], 2 Black [9.5%], 1 Asian [4.8%], and 2 with mixed ethnicity [9.5%]); mean disease duration 20.5 (SD 12.7) years; Hurley stage II (12 [57.1%]) or Stage III (9 [42.9%]) disease. Active HS lesions caused physical and psychological symptoms or limitations in all participants (100%). HS damage, namely scars or dyspigmentation, caused psychological symptoms or limitations in 17 participants (80.9%). HS damage caused physical symptoms or limitations in 8 participants (38.1%) and persisted independent of active lesions. Table 2 demonstrates participants’ symptoms and restrictions due to HS damage versus active lesions.

Table 2.

Major themes with representative quotations related to active lesions of HS and damage from HS.

	Active Lesions	Damage (scar or dyspigmentation)
Symptoms	Burning: heat and constant burning, stinging. Pain: The pain of when it’s about to burst I think is a throb. When a knot is coming up I can feel like electrical pulses and a throbbing. Drainage: But it popped and it just like gushed and oozed with phlegm and blood and it was just nasty. Odor: And that odor, when they drain and pop, it’s horrendous. Self-conscious: it makes me feel really down on myself and just unattractive. Depressed: I find myself feeling depressed or down or crying “Why me!”	Stretching: Every time I tried to move around, that stretching. Burning: It’s like if you’re burning it together kind of thing. Pain: The scar tissue can be painful. Dysethesia: When something touches it it’s just like pins and needles. Discomfort: I feel ‘em. I know they’re there. I feel ‘em, but no pain, just discomfort. Self-conscious: I had to swim and I couldn’t quite; I was afraid of people seeing my scars.
Restrictions or limitations	Dressing: I couldn’t even pull my panties up or put my bra on. Just to get dressed or go to the bathroom it was hurting. Clothing restrictions: I’ve been forced to wear sports bras because I can’t wear a regular bra because it cuts right into where I have scars that still hurt and active areas. Reaching: Reaching for things yes. The ones underneath my arms…during breakouts. Limb movement restrictions: Sometimes when I’m gonna mop and I have it there [under arm] it rubs me. And when I feel it I’m like ‘wow!’ Painful sex: There are times that I really don’t enjoy having sex. I really don’t enjoy it because it’s painful. Avoid sex, relationships: The dating world is not really something that I’m open to. I’m not married. And I have short-term relationships because I’m embarrassed about the outbreaks.	Grooming: Shaving of the armpits is almost a near impossible task because right now I have so many scar tissue and there’s always something underneath my arms. Clothing restrictions: You know some people shave when they wear shorts or something. I can’t ever wear skirts. One because I have a lot of scars and two because I can’t shave. Reaching: Reaching for things. Like stretching your arm. Yeah they do [feel tight]. Limb movement restricted: I don’t move my arm as much, so I don’t get skin on skin contact cuz [sic] when you do this rubbing motion it’s like ‘Oh, my scar!’ Affects sexual attractiveness: It’s embarrassing. It made me become pretty much totally inactive sexually, because who wants to see that?

Discussion

This study shows that patients with HS experience physical and psychological symptoms, with resultant limitations, due to HS damage and not only from active HS lesions. While this was an exploratory study of limited size, it may impact practice in multiple ways: First, patients may continue to report symptoms or restrictions even when there is little visible inflammation. Patients still need active management of their physical and psychological symptoms. Second, since scars can be symptomatic and limit activities, it is important to monitor the development of scarring separate from inflammatory disease activity as HS research is performed. Existing clinician-rated disease-severity measures either do not include a score for damage or it is part of a composite score. In future studies, it may be valuable to compare changes in QOL scores against separate HS activity and damage scores. For example, this may demonstrate differences in QOL if the burden of inflammatory disease and damage are mitigated with earlier interventions or particular therapies.