A multicenter, non-interventional study to evaluate patient-reported experiences of living with psoriasis
David Pariser, Brad Schenkel, Chureen Carter, Kamyar Farahi, T Michelle Brown, Charles N Ellis, Psoriasis Patient Interview Study Group, Lindsay Ackerman, April Armstrong, Jerry Bagel, Steven Feldman, Yolanda Helfrich, Alan Menter, David Pariser, Elyse Rafal, David Pariser, Brad Schenkel, Chureen Carter, Kamyar Farahi, T Michelle Brown, Charles N Ellis, Psoriasis Patient Interview Study Group, Lindsay Ackerman, April Armstrong, Jerry Bagel, Steven Feldman, Yolanda Helfrich, Alan Menter, David Pariser, Elyse Rafal
Abstract
Background: Moderate to severe plaque psoriasis (with or without psoriatic arthritis) places significant burden on patients' lives.
Objective: Explore and document patients' experiences of living with psoriasis, including symptoms, treatments, impact on daily lives and patient-reported functioning.
Methods: In a US-based, non-interventional study, narrative interviews were conducted at baseline and again within 16 weeks. In interviews, patients with moderate to severe psoriasis indicated symptoms, ranked symptoms according to level of bother and indicated areas of their lives affected by psoriasis. Transcripts of interviews were coded for themes. Measurements of psoriasis severity including BSA, PGA and PASI were recorded.
Results: Symptoms reported most frequently included flaking/scaling (non-scalp areas), itching/scratching and rash, while the most bothersome symptoms were itching/scratching, flaking/scaling (non-scalp areas) and skin pain. Frequently reported impact areas were social and emotional.
Conclusion: Broad-reaching interviews with patients with psoriasis show that these patients suffer in many aspects of their lives and in ways not indicated by typical psoriasis severity measures. Patients with psoriatic arthritis reported symptoms and disease-related complications at higher rates than those without arthritis. Physicians' explorations of the effect of psoriasis on patients' life events could aid in managing these patients.
Keywords: Narration; psoriasis; psoriatic arthritis; quality of life; video-audio media; videotape recording.
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References
- Kurd SK, Gelfand JM. The prevalence of previously diagnosed and undiagnosed psoriasis in US adults: results from NHANES 2003–2004. J Am Acad Dermatol. 2008;60:218–24.
- Krueger G, Koo J, Lebwohl M, et al. The impact of psoriasis on quality of life: results of a 1998 National Psoriasis Foundation patient-membership survey. Arch Dermatol. 2001;137:280–4.
- Gelfand JM, Gladman DD, Mease PJ, et al. Epidemiology of psoriatic arthritis in the population of the United States. J Am Acad Dermatol. 2005;53:573–7.
- Gupta MA, Schork NJ, Gupta AK, et al. Suicidal ideation in psoriasis. Int J Dermatol. 1993;32:188–90.
- Menter A, Gottlieb A, Feldman SR, et al. Guidelines of care for the management of psoriasis and psoriatic arthritis: section 1. Overview of psoriasis and guidelines of care for the treatment of psoriasis with biologics. J Am Acad Dermatol. 2008;58:826–50.
- Pariser DM, Bagel J, Gelfand JM, et al. for the National Psoriasis Foundation National Psoriasis Foundation clinical consensus on disease severity. Arch Dermatol. 2007;143:239–42.
- Globe D, Bayliss MS, Harrison DJ. The impact of itch symptoms in psoriasis: results from physician interviews and patient focus groups. Health Qual Life Outcomes. 2009;7:62.
- Bundy C, Borthwick M, McAteer H, et al. Psoriasis – snapshots of the unspoken: using novel methods to explore patients' personal models of psoriasis and the impact on well-being. Br J Dermatol. 2014;171:825–31.
- Sampogna F, Tabolli S, Abeni D. Living with psoriasis: prevalence of shame, anger, worry, and problems in daily activities and social life. Acta Derm Venereol. 2012;92:299–303.
- Kimball AB, Gieler U, Linder D, et al. Psoriasis: is the impairment to a patient's life cumulative? J Eur Acad Dermatol Venereol. 2010;24:989–1004.
- Strober BE, Nyirady J, Mallya UG, et al. Item-level psychometric properties for a new patient-reported psoriasis symptom diary. Value Health. 2013;16:1014–22.
- Armstrong AW, Schupp C, Wu J, Bebo B. Quality of life and work productivity impairment among psoriasis patients: findings from the National Psoriasis Foundation survey data 2003–2011. PLoS One. 2012;7:e52935.
- Lebwohl MG, Bachelez H, Barker J, et al. Patient perspectives in the management of psoriasis: results from the population-based Multinational Assessment of Psoriasis and Psoriatic Arthritis Survey. J Am Acad Dermatol. 2014;70:871–81.e30.
- Taylor WJ. Impact of psoriatic arthritis on the patient: through the lens of the WHO International Classification of Functioning, Health, and Disability. Curr Rheumatol Rep. 2012;14:369–74.
- Rosen CF, Mussani F, Chandran V, et al. Patients with psoriatic arthritis have worse quality of life than those with psoriasis alone. Rheumatology (Oxford) 2012;51:571–6.
Source: PubMed