Living with Pyoderma Gangrenosum: A Qualitative Study
Pyoderma gangrenosum is a rare, autoinflammatory disorder characterized by rapidly progressive painful ulcers that are challenging to diagnose and treat. This qualitative study aimed to explore the experiences of patients living with pyoderma gangrenosum. Using an inductive qualitative approach, sem...
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| Format: | Article |
| Language: | English |
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Medical Journals Sweden
2024-12-01
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| Series: | Acta Dermato-Venereologica |
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| Online Access: | https://medicaljournalssweden.se/actadv/article/view/42018 |
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| author | Jacqueline Jiang Robert Kelly Emma Veysey Susan Rossell Garry Zhu Darren Haywood |
| author_facet | Jacqueline Jiang Robert Kelly Emma Veysey Susan Rossell Garry Zhu Darren Haywood |
| author_sort | Jacqueline Jiang |
| collection | DOAJ |
| description | Pyoderma gangrenosum is a rare, autoinflammatory disorder characterized by rapidly progressive painful ulcers that are challenging to diagnose and treat. This qualitative study aimed to explore the experiences of patients living with pyoderma gangrenosum. Using an inductive qualitative approach, semi-structured interviews were completed with a purposive sample of 21 patients with pyoderma gangrenosum recruited from a public dermatology outpatient clinic in Melbourne, Australia. A reflexive thematic analysis was performed, yielding 5 themes: pain, physical challenges, social functioning and relationships, mental health, and treatment. The impact of pyoderma gangrenosum on quality of life was multifaceted and varied throughout disease progression, remission, and recurrence. Experiences of delayed diagnosis and misdiagnosis were common, causing distress and resulting in unnecessary treatments including surgery. Severe pain disrupted sleep and limited daily activities, eroding patients’ sense of self-control and perpetuating depressed mood and anxiety. Management should include early specialist referral, providing information sheets for managing pain and wound care, and communicating disease expectations. In conclusion, this study has deepened understanding and given personal perspectives on what it is like to live with a condition poorly understood by many health professionals. Increased efforts should be made to increase clinician awareness regarding pyoderma gangrenosum to facilitate early diagnosis.
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| format | Article |
| id | doaj-art-58efb7a1e77b485ab9ec4cf3ac95a4b1 |
| institution | OA Journals |
| issn | 0001-5555 1651-2057 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | Medical Journals Sweden |
| record_format | Article |
| series | Acta Dermato-Venereologica |
| spelling | doaj-art-58efb7a1e77b485ab9ec4cf3ac95a4b12025-08-20T02:19:04ZengMedical Journals SwedenActa Dermato-Venereologica0001-55551651-20572024-12-0110410.2340/actadv.v104.42018Living with Pyoderma Gangrenosum: A Qualitative StudyJacqueline Jiang0Robert Kelly1Emma Veysey2Susan Rossell3Garry Zhu4Darren Haywood5Department of Dermatology, St Vincent’s Hospital Melbourne, Fitzroy, VIC, AustraliaDepartment of Dermatology, St Vincent’s Hospital Melbourne, Fitzroy, VIC, AustraliaDepartment of Dermatology, St Vincent’s Hospital Melbourne, Fitzroy, VIC, Australia; Department of Dermatology, The Royal Women’s Hospital, Parkville, VIC, AustraliaDepartment of Mental Health, St Vincent’s Hospital Melbourne, Fitzroy, VIC, Australia; Centre for Mental Health and Brain Sciences, Swinburne University of Technology, Hawthorn, VIC, AustraliaDepartment of Mental Health, St Vincent’s Hospital Melbourne, Fitzroy, VIC, AustraliaDepartment of Mental Health, St Vincent’s Hospital Melbourne, Fitzroy, VIC, Australia; Human Performance Research Centre, INSIGHT Research Institute, Faculty of Health, University of Technology Sydney (UTS), NSW, Australia; Department of Psychiatry, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, VIC, Australia; Discipline of Psychology, School of Population Health, Curtin University, Bentley, WA, AustraliaPyoderma gangrenosum is a rare, autoinflammatory disorder characterized by rapidly progressive painful ulcers that are challenging to diagnose and treat. This qualitative study aimed to explore the experiences of patients living with pyoderma gangrenosum. Using an inductive qualitative approach, semi-structured interviews were completed with a purposive sample of 21 patients with pyoderma gangrenosum recruited from a public dermatology outpatient clinic in Melbourne, Australia. A reflexive thematic analysis was performed, yielding 5 themes: pain, physical challenges, social functioning and relationships, mental health, and treatment. The impact of pyoderma gangrenosum on quality of life was multifaceted and varied throughout disease progression, remission, and recurrence. Experiences of delayed diagnosis and misdiagnosis were common, causing distress and resulting in unnecessary treatments including surgery. Severe pain disrupted sleep and limited daily activities, eroding patients’ sense of self-control and perpetuating depressed mood and anxiety. Management should include early specialist referral, providing information sheets for managing pain and wound care, and communicating disease expectations. In conclusion, this study has deepened understanding and given personal perspectives on what it is like to live with a condition poorly understood by many health professionals. Increased efforts should be made to increase clinician awareness regarding pyoderma gangrenosum to facilitate early diagnosis. https://medicaljournalssweden.se/actadv/article/view/42018pyoderma gangrenosumqualitative researchquality of life |
| spellingShingle | Jacqueline Jiang Robert Kelly Emma Veysey Susan Rossell Garry Zhu Darren Haywood Living with Pyoderma Gangrenosum: A Qualitative Study Acta Dermato-Venereologica pyoderma gangrenosum qualitative research quality of life |
| title | Living with Pyoderma Gangrenosum: A Qualitative Study |
| title_full | Living with Pyoderma Gangrenosum: A Qualitative Study |
| title_fullStr | Living with Pyoderma Gangrenosum: A Qualitative Study |
| title_full_unstemmed | Living with Pyoderma Gangrenosum: A Qualitative Study |
| title_short | Living with Pyoderma Gangrenosum: A Qualitative Study |
| title_sort | living with pyoderma gangrenosum a qualitative study |
| topic | pyoderma gangrenosum qualitative research quality of life |
| url | https://medicaljournalssweden.se/actadv/article/view/42018 |
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