The experience of pain and redness in patients with moderate to severe plaque psoriasis

Abstract

Introduction: The Psoriasis Symptom Inventory is a patient-reported outcome instrument that assesses severity of psoriasis signs and symptoms. In early qualitative research, patients reported pain related to psoriasis skin lesions and redness of affected areas of skin as key symptoms. Methods: Individual concept elicitation interviews and cognitive interviews were conducted in adults with moderate to severe plaque psoriasis. Interviews were audio-recorded and transcribed. Concepts were identified, coded and grouped by similar content using Atlas.ti software. Results were evaluated using qualitative research methods. Results: Of 30 patients recruited, 20 patients participated in concept elicitation interviews and 10 participated in cognitive interviews. Concept codes for skin pain and descriptions of color comprised 11% and 15%, respectively, of all symptom-related expressions. Of 90 pain-related expressions, 22 were about pain related to unconscious scratching and 68 were about pain from the psoriasis lesions. Of 199 color-related expressions, 72 were about red or reddish lesion color. Patients with darker skin tones were found to interpret redness consistently. Discussion: These results provide further support to content validity of pain and redness concepts in the Psoriasis Symptom Inventory. Conclusions: Symptoms of skin pain and redness are highly relevant to patients with psoriasis.

Patients’ Perspectives and Experience of Psoriasis and Psoriatic Arthritis: A Systematic Review and Thematic Synthesis of Qualitative Studies

“…(8) The psychological impact of psoriasis was characterized by constant worry, a struggle for control and a fear of stress triggering symptoms. (2) Dreading deterioration 5,8,9,22,38,39,41,44,53 "How fast it's going to degenerate…I don't want to be some person who's sitting in a chair somewhere unable to move, and that sometimes makes me a bit anxious." (8) "It's depressing…you can't see it getting any better…just worse and worse and worse… might be a slight improvement, but the general trend…it is very depressing."…”

“…Limited by debilitating symptoms. Skin symptoms were "burning" (22) and "painful" (22) to the extent that patients want ed to self harm or "rip (their) skin off" (23). Pain and joint dys function were disabling, such that patients could not leave their house or even "brush their hair" (21).…”

“…,11,19,21,22,26,27,37,39,41,42,45,46,50,51,56 "People don't realize how uncomfortable it is. If it looks bad, they sympathize, people don't realize unless it looks bad.…”

“…(19) "She's got MS, but she's less disabled than I am, and that's what's annoying. "(8) The failure of practitioners explicitly to acknowledge in consultations the feelings of stigma and lack of control often associated with psoriasis was commonly reported in both primary and Themes, illustrative quotations, and text Contributing studiesHarboring shame and judgement Marked as unhygienic and contagious2,5,7,11,[19][20][21][22]25,26,37,39,42,44,51,53,55 "My relatives do not come to our house…They say your disease is contagious and we might get infected." (11) "People take a step back, it can be horrifying, they give you a funny look, as if you have 3heads.…”

“…(45) "Treating your symptoms takes 2 and a half hours out of each and every day whilst the embarrassment of cleaning up continual masses of fallen 'scales' exhausts me." (5) Deterred by unpalatable or inconvenient treatments2,4,5,9,13,19,22,32,[37][38][39][41][42][43][44][45]49,51,54,55 "Just the thought of taking more medication and taking that long term, that bit worries me." (9) "It is just not natural" and "I don't want this in my body.…”