Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep?
Abstract Background Dermatomyositis (DM) is a rare and severely debilitating autoimmune disease that can affect children and adults; however, there is little understanding of the patient-reported experience and uncertainty around validated clinical outcomes assessments (COAs) that could measure chan...
Saved in:
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Adis, Springer Healthcare
2024-09-01
|
| Series: | Dermatology and Therapy |
| Subjects: | |
| Online Access: | https://doi.org/10.1007/s13555-024-01266-1 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850182480071491584 |
|---|---|
| author | Stephanie McKee Jason Xenakis Harriet Makin Chris Marshall Randall Winnette Rohit Aggarwal Sarah Knight |
| author_facet | Stephanie McKee Jason Xenakis Harriet Makin Chris Marshall Randall Winnette Rohit Aggarwal Sarah Knight |
| author_sort | Stephanie McKee |
| collection | DOAJ |
| description | Abstract Background Dermatomyositis (DM) is a rare and severely debilitating autoimmune disease that can affect children and adults; however, there is little understanding of the patient-reported experience and uncertainty around validated clinical outcomes assessments (COAs) that could measure changes in the condition during clinical trials of new treatments. Objectives The aim of this study was to understand the patient experience of DM, with a focus on its cutaneous manifestations, to describe the patient experience and determine the suitability of existing COA measures. Methods Adult (≥ 18 years) patients (N = 28) with severe active cutaneous manifestations of DM were interviewed. In the 90-min interviews, open-ended questions and probes were used to elicit descriptions of key clinical manifestations and patients’ experiences of DM, including the symptoms and impacts on their daily lives and wellbeing. Results Patients reported 13 different skin manifestations of DM. The most common were rash (n = 28, 100%), itch (n = 28, 100%), dry skin (n = 23, 82%), and swelling of the skin (n = 17, 61%). The head and face, followed by hands, were perceived as the most bothersome body areas affected by skin manifestations, because they are exposed and visible to themselves and other people. All patients (n = 28, 100%) reported at least one impact of DM, which varied greatly between patients, but included emotional, psychological, cognitive, and physical impacts, and those affecting daily life, such as work and sleep. Over half of the patients (n = 19, 67%) reported that their daily activities were impacted by DM. Conclusions The qualitative interviews with patients revealed that the presentation of DM manifestations is highly variable but affects patients’ emotional wellbeing, physical activities, and daily life significantly. |
| format | Article |
| id | doaj-art-e83cc7a119e44cc6af886f2d95cd3535 |
| institution | OA Journals |
| issn | 2193-8210 2190-9172 |
| language | English |
| publishDate | 2024-09-01 |
| publisher | Adis, Springer Healthcare |
| record_format | Article |
| series | Dermatology and Therapy |
| spelling | doaj-art-e83cc7a119e44cc6af886f2d95cd35352025-08-20T02:17:37ZengAdis, Springer HealthcareDermatology and Therapy2193-82102190-91722024-09-0114102771278510.1007/s13555-024-01266-1Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep?Stephanie McKee0Jason Xenakis1Harriet Makin2Chris Marshall3Randall Winnette4Rohit Aggarwal5Sarah Knight6Clinical Outcomes AssessmentPfizer IncClinical Outcomes AssessmentClinical Outcomes AssessmentPfizer IncUniversity of Pittsburgh Medical CentreClinical Outcomes AssessmentAbstract Background Dermatomyositis (DM) is a rare and severely debilitating autoimmune disease that can affect children and adults; however, there is little understanding of the patient-reported experience and uncertainty around validated clinical outcomes assessments (COAs) that could measure changes in the condition during clinical trials of new treatments. Objectives The aim of this study was to understand the patient experience of DM, with a focus on its cutaneous manifestations, to describe the patient experience and determine the suitability of existing COA measures. Methods Adult (≥ 18 years) patients (N = 28) with severe active cutaneous manifestations of DM were interviewed. In the 90-min interviews, open-ended questions and probes were used to elicit descriptions of key clinical manifestations and patients’ experiences of DM, including the symptoms and impacts on their daily lives and wellbeing. Results Patients reported 13 different skin manifestations of DM. The most common were rash (n = 28, 100%), itch (n = 28, 100%), dry skin (n = 23, 82%), and swelling of the skin (n = 17, 61%). The head and face, followed by hands, were perceived as the most bothersome body areas affected by skin manifestations, because they are exposed and visible to themselves and other people. All patients (n = 28, 100%) reported at least one impact of DM, which varied greatly between patients, but included emotional, psychological, cognitive, and physical impacts, and those affecting daily life, such as work and sleep. Over half of the patients (n = 19, 67%) reported that their daily activities were impacted by DM. Conclusions The qualitative interviews with patients revealed that the presentation of DM manifestations is highly variable but affects patients’ emotional wellbeing, physical activities, and daily life significantly.https://doi.org/10.1007/s13555-024-01266-1DermatomyositisCutaneous manifestationsPatient experience |
| spellingShingle | Stephanie McKee Jason Xenakis Harriet Makin Chris Marshall Randall Winnette Rohit Aggarwal Sarah Knight Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep? Dermatology and Therapy Dermatomyositis Cutaneous manifestations Patient experience |
| title | Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep? |
| title_full | Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep? |
| title_fullStr | Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep? |
| title_full_unstemmed | Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep? |
| title_short | Cutaneous Manifestations in Patients with Dermatomyositis, Are They Only Skin Deep? |
| title_sort | cutaneous manifestations in patients with dermatomyositis are they only skin deep |
| topic | Dermatomyositis Cutaneous manifestations Patient experience |
| url | https://doi.org/10.1007/s13555-024-01266-1 |
| work_keys_str_mv | AT stephaniemckee cutaneousmanifestationsinpatientswithdermatomyositisaretheyonlyskindeep AT jasonxenakis cutaneousmanifestationsinpatientswithdermatomyositisaretheyonlyskindeep AT harrietmakin cutaneousmanifestationsinpatientswithdermatomyositisaretheyonlyskindeep AT chrismarshall cutaneousmanifestationsinpatientswithdermatomyositisaretheyonlyskindeep AT randallwinnette cutaneousmanifestationsinpatientswithdermatomyositisaretheyonlyskindeep AT rohitaggarwal cutaneousmanifestationsinpatientswithdermatomyositisaretheyonlyskindeep AT sarahknight cutaneousmanifestationsinpatientswithdermatomyositisaretheyonlyskindeep |