Article
Conjoint Methodology Used to Assess Patient preferences in Cryopyrin-associated autoinflammatory syndrome (CAPS)
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Authors
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Jasmin Kümmerle-Deschner
- Universitätskinderklinik Tuebingen, Rheumatologie, Tübingen
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Karoline Krause
- Charité - Universitätsmedizin Berlin, Klinik für Dermatologie, „Allergie-Centrum Charité“, Berlin
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Birgit Kortus-Götze
- Universitätsklinikum Gießen und Marburg, Klinik für Innere Medizin, Schwerpunkt Nephrologie, Marburg
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Astrid Thürigen
- Novartis Pharma GmbH, Nürnberg
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Giovanni Pisa
- Kantar Health GmbH, München, Germany
| Published: | September 1, 2015 |
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Outline
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Introduction: Cryopyrin-Associated Periodic Syndromes (CAPS) are a group of rare hereditary autoinflammatory diseases1. To optimize disease management strategies in this group of rare diseases understanding of patient preferences is crucial.
The objective is to assess disease and therapy related preferences of patients with CAPS using conjoint methodology.
Methods: Initial research phase included 5 group discussions with at least 1 patient diagnosed with CAPS and 1 relative, for a total of 8 CAPS patients and 5 relatives. This phase served to assess patients’ health state (e.g. symptomatology and attitude towards the disease) and understand quality of life, unmet needs, and preferences related to medications. Further, 3 telephone interviews were conducted with therapeutical experts.
Main research phase included 22 patients with CAPS, who answered an online conjoint survey. Each patient was presented with 15 different choice-tasks during the survey. Each task contained 3 different health state profiles: the patient had to choose which one they preferred as their personal health state option.
Results: Qualitative phase highlighted two important aspects of CAPS: the mental burden of the disease (e.g. heritability of the disease and fear of symptoms recurrence) and the few concerns about the administration of the drug (canakinumab already represented an improvement in the administration frequency).
Resulting from the conjoint survey, the attribute with the highest relative importance was the mental burden due to their disease (23%), directly followed by fatigue/listlessness (19%) and performance capacity (daily activities) (18%). The frequency of administration of the CAPS medication and the fear due to the drug administration (15%) were reported to be equally important. The least important aspect was represented by the skin reactions at the injection site (10%). Detailed results about part-worth utilities within the conjoint analysis will be discussed.
Conclusion: Results of this research suggest that those disease aspects which impact the quality of life (e.g. mental burden, fatigue, performance capacity) play a major role for patient preference. Other aspects connected to the medication of CAPS (e.g. frequency of administration, fear of administering the drug, skin reactions) seem to be subordinated.
