Perspectives on Living with Chronic Spontaneous Urticaria: From Onset through Diagnosis and Disease Management in the US
Stanley Goldstein, Sanaz Eftekhari, Lynda Mitchell, Tonya A. Winders, Leslie Kaufman, Debra Dudas, Brandee Paknis, Abhishek Kavati, Virginie Delwart, Howard L Sofen
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Chronic spontaneous urticaria is challenging to manage and substantially affects quality of life. This US non-interventional qualitative study examined patients’ clinical journeys and emotional burden from symptom onset through disease management. Chronic spontaneous urticaria patients participated in interviews and completed diaries focusing on disease and treatment history/perspectives impact on personal/family life and relationships with physicians/other healthcare providers. Physicians were interviewed about their views on disease management and patient care. Twenty-five patients previously or currently receiving chronic spontaneous urticaria treatment(s) and 12 physicians participated. Key stages following symptom onset were identified: Crisis (associated with feelings of torment/disorientation/shock) Searching for answers (puzzlement/frustration/anxiety) Diagnosis (relief/satisfaction/fear/isolation) and Disease management (frustration/hope/powerlessness). Findings revealed patients’ perceptions and experiences of chronic spontaneous urticaria including living with a ‘skinemy’ experiencing their ‘own personal hell’ and feeling ‘like an experiment’. Awareness of unmet needs in patient care/management identified in this study may ultimately improve patient support and enhance physicians’ understanding of disease burden.
• Chronic idiopathic/spontaneous urticaria (CIU/CSU) has a substantial impact on patients’ quality of life. This study’s findings can help physicians recognize both the emotional and physical burden of CIU/CSU.
• Patients’ frustration with time taken to reach diagnosis and with cycling through different treatments (and sometimes clinicians) until treatment success achieved was commonly experienced. Physicians also experienced frustration with the patient care pathway.
• Greater support and further education are needed for patients and physicians.
• Maintaining open channels of communication and engaging in shared decision-making may benefit the patient–physician relationship ease frustration and encourage a more collaborative approach to long-term disease management.