Qualitative study shows disease damage matters to patients with hidradenitis suppurativa
2016; Elsevier BV; Volume: 74; Issue: 6 Linguagem: Inglês
10.1016/j.jaad.2016.01.001
ISSN1097-6787
Autores Tópico(s)Dupuytren's Contracture and Treatments
ResumoTo the Editor: Hidradenitis suppurativa (HS), a chronic, inflammatory skin disease, causes intensely sore nodules and abscesses that result in scars and dyspigmentation.1Jemec G.B. Heidenheim M. Nielsen N.H. Hidradenitis suppurativa–characteristics and consequences.Clin Exp Dermatol. 1996; 21: 419-423Crossref PubMed Scopus (117) Google Scholar New validated scoring tools for skin diseases incorporate separate “damage” and “activity” scores.2Albrecht J. Werth V.P. Development of the CLASI as an outcome instrument for cutaneous lupus erythematosus.Dermatol Ther. 2007; 20: 93-101Crossref PubMed Scopus (46) Google Scholar, 3Loh C.C. Kim J. Su J.C. et al.Development, reliability, and validity of a novel Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI).J Am Acad Dermatol. 2014; 70 (e81-13): 89-97Abstract Full Text Full Text PDF PubMed Scopus (36) Google Scholar, 4Rosenbach M. Murrell D.F. Bystryn J.C. et al.Reliability and convergent validity of two outcome instruments for pemphigus.J Invest Dermatol. 2009; 129: 2404-2410Abstract Full Text Full Text PDF PubMed Scopus (173) Google Scholar This is important since both “active,” or inflammatory, lesions and disease “damage,” namely scars or dyspigmentation, can negatively impact patients' quality of life and self-esteem.5Brown B.C. Moss T.P. McGrouther D.A. Bayat A. Skin scar preconceptions must be challenged: importance of self-perception in skin scarring.J Plast Reconstr Aesthet Surg. 2010; 63: 1022-1029Abstract Full Text Full Text PDF PubMed Scopus (81) Google Scholar In addition, non-visible scars cause greater psychosocial distress than visible scars.5Brown B.C. Moss T.P. McGrouther D.A. Bayat A. Skin scar preconceptions must be challenged: importance of self-perception in skin scarring.J Plast Reconstr Aesthet Surg. 2010; 63: 1022-1029Abstract Full Text Full Text PDF PubMed Scopus (81) Google Scholar This is especially apropos for HS patients. Thus, the objective of this study was to explore HS patients' experiences with disease symptoms, relating to damage versus ‘active’ or inflammatory HS lesions. We performed an exploratory, qualitative study with patients evaluated for HS in the Penn State Department of Dermatology. Patients were recruited in June 2015 and after giving verbal consent and confirming English fluency, semi-structured interviews were performed in-person by one interviewer (J.S.K.) using an interview guide (Table I). Interviews were performed in July and August 2015. Interviews were tape-recorded and transcribed verbatim. Transcripts were reviewed line-by-line after each interview and words, phrases, and passages were coded using NVivo 10 (QSR International, Burlington MA). These codes were used to inform subsequent interviews. Codes were reviewed after each interview, and the final codes were applied to all interviews, then 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 IExamples of the questions used during interviews with participantsWhat 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?HS, Hidradenitis suppurativa. Open table in a new tab HS, Hidradenitis suppurativa. Twenty-one patients participated (16 females [76.2%], 5 males [23.8%]); mean age was 46.8 years (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 was 20.5 years (SD, 12.7 years); Hurley stage II (12 [57.1%]) or Stage III (9 [42.9%]) disease. HS damage, scars, or dyspigmentation, caused psychological symptoms or limitations in 17 participants (80.9%) and physical symptoms or limitations in 8 participants (38.1%). These persisted after active lesions resolved. Table II demonstrates participants' symptoms and restrictions due to HS damage.Table IIMajor themes with representative quotations related to damage from HSDamage (scar or dyspigmentation)SymptomsStretching: 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 limitationsGrooming: 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?HS, Hidradenitis suppurativa. Open table in a new tab HS, Hidradenitis suppurativa. 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, it is important to monitor the development of scarring separate from inflammatory disease activity. Existing HS outcome measures either do not score disease damage or it is included within a composite score. This needs to be changed since a composite score may not accurately reflect the flux of inflammatory lesions or accumulation of damage. Second, this study suggests that damage has an important impact on patients' quality of life; thus, separate scores improve tool validity. Lastly, patients may continue to report symptoms or restrictions due to damage rather than inflammation. As a result, patients need active management of their physical and psychological symptoms due to damage.
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