Perspectives on Living with Chronic Spontaneous Urticaria: From Onset through Diagnosis and Disease Management in the US

• Published in: Acta dermato-venereologica Vol. 99; no. 12; pp. 1091 - 1098
• Main Authors: Goldstein, Stanley, Eftekhari, Sanaz, Mitchell, Lynda, Winders, Tonya A, Kaufman, Leslie, Dudas, Debra, Paknis, Brandee, Kavati, Abhishek, Delwart, Virginie, Sofen, Howard L
• Format: Journal Article
• Language: English
• Published: Sweden Medical Journals Sweden 01-11-2019
• Subjects: Adaptation, Psychological; Adult; Aged; Chronic Urticaria - diagnosis; Chronic Urticaria - psychology; Chronic Urticaria - therapy; Cost of Illness; Emotions; Female; hives; Humans; Male; Middle Aged; Prognosis; Qualitative Research; Quality of Life; Time Factors; United States; urticaria; urticaria psychology; Young Adult; United States; hives; urticaria psychology; qualitative research; quality of life; urticaria
• ISSN: 0001-5555; 1651-2057
• DOI: 10.2340/00015555-3282

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.