Author(s)
Maurer M1, Balp MM2, O'Donoghue J3, Danyliv A4, Christen L4, Smeets S4, Mueller M5, LopezOrtiz D6, Mckenna SJ7, De Ruijter A8, Freedle K9, Morrison S10, Winders T11, Bernstein JA12, Giménez-Arnau AM13
1Charité - Universitätsmedizin, Berlin, Germany, 2Novartis Pharma AG, Basel, BS, Switzerland, 3Ipsos SA, Basel, Switzerland, 4Novartis Pharma AG, Basel, Switzerland, 5Novartis Pharma GmbH, Nuremberg, Germany, 6Novartis Farmaceutica, S.A., Barcelona, Spain, 7Novartis Business Services, Dublin, Ireland, 8Novartis Pharma B.V, Amsterdam, Netherlands, 9Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA, 10Ipsos, London, UK, 11Allergy & Asthma Network, Vienna, VA, USA, 12University of Cincinnati College of Medicine, Cincinnati, OH, USA, 13Hospital del Mar, Barcelona, Spain
OBJECTIVES To understand the patient view on disease manifestations, impact, knowledge and expectations related to treatments among patients with Chronic Spontaneous Urticaria (CSU). METHODS The qualitative phase of this patient preference study comprised telephone interviews with patients diagnosed with CSU, inadequately controlled on H1 antihistamines recruited via physician referral in the USA, Germany and via a patient panel in Spain. Questions focused on symptoms and comorbidities; physical and emotional impact, perception/knowledge of CSU; management; experience with treatments and expectations from future treatments. RESULTS The cohort comprised 30 patients, 77% female, mean (SD) age 42 (15) years and time since diagnosis of 9 (9) years. Overall findings were consistent across countries. Most reported comorbidities were anxiety/depression (30%), sleep disturbance (23%) and allergies (20%). Itching intensity, swelling, soreness were high but variable over time, and sleep disturbance was more impactful for the Spanish patients. The emotional burden (e.g. irritation, overwhelming, impact on self-esteem) was reported as high at onset and worsening over time if the disease remained uncontrolled. Patients reported inability to function normally, their social and personal life highly impacted, and dependency on medication and high daily pill burden was a problem. There was variability in the level of knowledge of CSU, patients relying on information from their physician (considered sometimes sub-optimal) and online sources. The unpredictability of the symptoms and uncertainty around the duration of disease were reported consistently. Patients were desperate for complete relief and considered this a key outcome for future treatments. Most patients would accept mild short-term downsides for high efficacy and long-term symptom-free periods. CONCLUSIONS This study highlights the complex impact of CSU and reveals expectations that patients have from treatments. The data will be used to design a discrete choice experiment to assess in a quantitative way preference for treatment profiles to support future assessment of drugs in CSU.
Conference/Value in Health Info
2021-11, ISPOR Europe 2021, Copenhagen, Denmark
Value in Health, Volume 24, Issue 12, S2 (December 2021)
Code
POSC368
Topic
Patient-Centered Research
Topic Subcategory
Stated Preference & Patient Satisfaction
Disease
Systemic Disorders/Conditions