Abstract
Dermatomyositis (DM) is a rare autoimmune disease characterized by distinctive cutaneous manifestations, often accompanied by muscle inflammation and interstitial lung disease. DM has a significant impact on quality of life (QoL) in patients, due to the physical and emotional symptoms caused by their disease. Despite this known emotional impact, there is no published literature capturing how adults with DM feel about their disease, from their perspective. We seek to better understand how cutaneous DM impacts patients in their daily lives. Seventeen patients with cutaneous DM presenting to an autoimmune dermatology clinic were interviewed about how their cutaneous findings have impacted their life. Patients were asked three questions: what troubles you the most about your cutaneous/skin DM, how much bother does the skin DM cause, and what about your skin disease most impacts your daily life. Responses were scribed by a second researcher. Themes and subthemes from the interviews were generated. Of 17 patients, 17 (100%) were female, 7 (41%) had amyopathic DM, median age was 65 years (IQR 48–68), and median Cutaneous Dermatomyositis Disease Area and Severity Index (CDASI) activity score was 12 (IQR 6–17.5) at the time of interview. Seven themes emerged. Most reported physical signs included: itchiness (n = 10, 59%) and physical pain/uncomfortableness (n = 6, 35%). Our study demonstrates that patients are burdened by the physical, emotional and social aspects of their disease, and struggle to manage it. This better understanding of how patients feel will help guide management and allow clinicians to address patient needs. Additionally, these insights may help in the development of QoL tools that address the concerns of patients with severe and chronic skin conditions, like DM.
References
Iaccarino L, Ghirardello A, Bettio S, Zen M, Gatto M, Punzi L et al (2014) The clinical features, diagnosis and classification of dermatomyositis. J Autoimmun 48–49:122–127
Goreshi R, Chock M, Foering K, Feng R, Okawa J, Rose M et al (2011) Quality of life in dermatomyositis. J Am Acad Dermatol 65:1107–1116
Eaton K, Stritzke W, Ohan J (2019) Using scribes in qualitative research as an alternative to transcription. Qual Rep 24(3):586–605
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3:77–101
De Korte J, Mombers FM, Sprangers MA, Bos JD (2002) The suitability of quality-of-life questionnaires for psoriasis research: a systematic literature review. Arch Dermatol 138:1221–7
Bendewald MJ, Wetter DA, Li X, Davis MD (2010) Incidence of dermatomyositis and clinically amyopathic dermatomyositis: a population-based study in Olmsted County Minnesota. Arch Dermatol 146:26–30
Gerami P, Schope JM, McDonald L, Walling HW, Sontheimer RD (2006) A systematic review of adult-onset clinically amyopathic dermatomyositis (dermatomyositis sine myositis): a missing link within the spectrum of the idiopathic inflammatory myopathies. J Am Acad Dermatol 54:597–613
Funding
The study was supported by the National Institutes of Health (R01AR076766), Philadelphia Tri-State Chapter and the US Department of Veterans Affairs (Veterans Health Administration, Office of Research and Development and Biomedical Laboratory Research and Development).
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JK contributed to conception and design of study, data collection, and data analysis. JDW contributed to data collection and data analysis. RP and DL contributed to data collection. JSC contributed to design of the study. VPW obtained funding and supervised the study. All authors were involved in manuscript preparation and review and approved the final version for publication.
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VPW has grants from Pfizer, Corbus and CSL Behring, Priovant and has consulted for Pfizer, Janssen, Bristol Myers Squibb, Octapharma, CSL Behring, Corbus, Galderma, Novartis, Rome Pharmaceuticals. The University of Pennsylvania owns copyright over the CDASI.
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Kleitsch, J., Weiner, J.D., Pandya, R. et al. The physical and emotional impact of cutaneous dermatomyositis: a qualitative study. Arch Dermatol Res 315, 2431–2435 (2023). https://doi.org/10.1007/s00403-023-02625-2
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DOI: https://doi.org/10.1007/s00403-023-02625-2