Jiang Jacqueline, Kelly Robert, Veysey Emma, Rossell Susan, Zhu Garry, Haywood Darren
Department of Dermatology, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia.
Department of Dermatology, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia; Department of Dermatology, The Royal Women's Hospital, Parkville, VIC, Australia.
Acta Derm Venereol. 2024 Dec 4;104:adv42018. doi: 10.2340/actadv.v104.42018.
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.
坏疽性脓皮病是一种罕见的自身炎症性疾病，其特征为迅速进展的疼痛性溃疡，诊断和治疗颇具挑战性。这项定性研究旨在探索坏疽性脓皮病患者的经历。采用归纳性定性方法，对从澳大利亚墨尔本一家公立皮肤科门诊招募的21名坏疽性脓皮病患者进行了半结构化访谈。进行了反思性主题分析，得出5个主题：疼痛、身体挑战、社会功能与人际关系、心理健康和治疗。坏疽性脓皮病对生活质量的影响是多方面的，且在疾病进展、缓解和复发过程中各不相同。延迟诊断和误诊的情况很常见，会造成痛苦并导致包括手术在内的不必要治疗。剧烈疼痛扰乱睡眠并限制日常活动，侵蚀患者的自我控制感，使抑郁情绪和焦虑持续存在。管理措施应包括早期转诊至专科医生、提供疼痛管理和伤口护理的信息单以及沟通疾病预期。总之，本研究加深了对这种许多健康专业人员了解不足的疾病患者生活状况的理解，并给出了个人观点。应加大力度提高临床医生对坏疽性脓皮病的认识，以促进早期诊断。
