Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts
Abstract Introduction Bullous pemphigoid (BP) is a chronic autoimmune blistering disorder that imposes a significant health-related quality of life burden on the lives of patients; however, there are limited data on patient experiences. Methods We conducted qualitative open-ended interviews of patie...
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| Format: | Article |
| Language: | English |
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Adis, Springer Healthcare
2025-05-01
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| Series: | Dermatology and Therapy |
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| Online Access: | https://doi.org/10.1007/s13555-025-01424-z |
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| author | Calvin N. Ho Lila Bahadori Marc Yale Naomi Bishop Caroline Roberts Oren Meyers Julie Bailey Neil J. Korman |
| author_facet | Calvin N. Ho Lila Bahadori Marc Yale Naomi Bishop Caroline Roberts Oren Meyers Julie Bailey Neil J. Korman |
| author_sort | Calvin N. Ho |
| collection | DOAJ |
| description | Abstract Introduction Bullous pemphigoid (BP) is a chronic autoimmune blistering disorder that imposes a significant health-related quality of life burden on the lives of patients; however, there are limited data on patient experiences. Methods We conducted qualitative open-ended interviews of patients from the USA, Spain, and France, to understand BP symptoms and impacts, and develop a conceptual model. Adults with a confirmed BP diagnosis were included. Patients with pemphigus or drug-induced BP were excluded. Results Thirty participants were recruited. The mean (standard deviation) age was 63.6 (16.0) years. Eleven signs and symptoms and 24 impacts were reported; six signs and symptoms, and 13 impacts affected ≥ 50% of participants with an average disturbance rating of ≥ 5 out of 10 (scale of 0 to 10 [0, not disturbing; 10, extremely disturbing]). All participants reported typical signs and symptoms of classic and/or mucosal BP. Overall, five of six salient symptoms and four of 13 salient impacts had an average disturbance rating of ≥ 7.5/10, indicating that BP is highly burdensome. Regarding corticosteroids, participants expressed a strong desire to avoid taking them again, due to the associated unwanted side effects. Conclusion The conceptual model presented here can be the basis for endpoint selection in studies of new therapies for BP. |
| format | Article |
| id | doaj-art-523a12a31db34e31a6f80b072eebbd81 |
| institution | OA Journals |
| issn | 2193-8210 2190-9172 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | Adis, Springer Healthcare |
| record_format | Article |
| series | Dermatology and Therapy |
| spelling | doaj-art-523a12a31db34e31a6f80b072eebbd812025-08-20T02:39:04ZengAdis, Springer HealthcareDermatology and Therapy2193-82102190-91722025-05-011571813183110.1007/s13555-025-01424-zPatient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life ImpactsCalvin N. Ho0Lila Bahadori1Marc Yale2Naomi Bishop3Caroline Roberts4Oren Meyers5Julie Bailey6Neil J. Korman7Late-Stage Development, Respiratory and Immunology, BioPharmaceuticals R&D, AstraZenecaLate-Stage Development, Respiratory and Immunology, BioPharmaceuticals R&D, AstraZenecaInternational Pemphigus and Pemphigoid FoundationPatient AuthorPatient Centered Solutions, IQVIAPatient Centered Solutions, IQVIAPatient Centered Solutions, IQVIAUniversity Hospitals Cleveland Medical CenterAbstract Introduction Bullous pemphigoid (BP) is a chronic autoimmune blistering disorder that imposes a significant health-related quality of life burden on the lives of patients; however, there are limited data on patient experiences. Methods We conducted qualitative open-ended interviews of patients from the USA, Spain, and France, to understand BP symptoms and impacts, and develop a conceptual model. Adults with a confirmed BP diagnosis were included. Patients with pemphigus or drug-induced BP were excluded. Results Thirty participants were recruited. The mean (standard deviation) age was 63.6 (16.0) years. Eleven signs and symptoms and 24 impacts were reported; six signs and symptoms, and 13 impacts affected ≥ 50% of participants with an average disturbance rating of ≥ 5 out of 10 (scale of 0 to 10 [0, not disturbing; 10, extremely disturbing]). All participants reported typical signs and symptoms of classic and/or mucosal BP. Overall, five of six salient symptoms and four of 13 salient impacts had an average disturbance rating of ≥ 7.5/10, indicating that BP is highly burdensome. Regarding corticosteroids, participants expressed a strong desire to avoid taking them again, due to the associated unwanted side effects. Conclusion The conceptual model presented here can be the basis for endpoint selection in studies of new therapies for BP.https://doi.org/10.1007/s13555-025-01424-zBullous pemphigoidBurden of illnessCorticosteroidsInterviewQuality of lifeSigns and symptoms |
| spellingShingle | Calvin N. Ho Lila Bahadori Marc Yale Naomi Bishop Caroline Roberts Oren Meyers Julie Bailey Neil J. Korman Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts Dermatology and Therapy Bullous pemphigoid Burden of illness Corticosteroids Interview Quality of life Signs and symptoms |
| title | Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts |
| title_full | Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts |
| title_fullStr | Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts |
| title_full_unstemmed | Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts |
| title_short | Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts |
| title_sort | patient experiences of bullous pemphigoid symptoms and health related quality of life impacts |
| topic | Bullous pemphigoid Burden of illness Corticosteroids Interview Quality of life Signs and symptoms |
| url | https://doi.org/10.1007/s13555-025-01424-z |
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