Modelling of patient journey in chronic spontaneous urticaria: Increasing awareness and education by shorten patients' disease journey in Germany
Open accessAbstract
Background: Chronic spontaneous urticaria (CSU) is both physically and emotionally stressful, and guideline recommendations are often not optimally implemented in clinical practice. The objective of this study was to provide an overview on the patient journey in CSU and to develop a mathematical model based on solid data. Methods: The journey of CSU patients in Germany was traced through literature review and expert meetings that included medical experts, pharmacists and representatives of patient organizations. The current situation's main challenges in the patient journey (education, collaboration and disease management) were discussed in depth. Then, a probabilistic model was developed in a co‐creation approach to simulate the impact of three potential improvement strategies: (1) patient education campaign, (2) medical professional education programme and (3) implementation of a disease management programme (DMP). Results: Chronic spontaneous urticaria patients are severely burdened by delays in diagnosis and optimal medical care. Our simulation indicates that in Germany, it takes on average of 3.8 years for patients to achieve disease control in Germany. Modelling all three optimization strategies resulted in a reduction to 2.5 years until CSU symptom control. On a population level, the proportion of CSU patients with disease control increased from 44.2% to 58.1%. Conclusions: In principle, effective CSU medications and a disease‐specific guideline are available. However, implementation of recommendations is lagging in practice. The approach of quantitative modelling of the patient journey validates obstacles and shows a clear effect of multiple interventions on the patient journey. The data generated by our simulation can be used to identify strategies for improving patient care. Our approach might helping in understanding and improving the management of patients beyond CSU.
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Documentation such as a urticaria diary (and possibly photos) can be very helpful in diagnosing and treating chronic urticaria.
“Such documentation, such as a urticaria diary (and possibly photos), can be very helpful in diagnosing and treating the disease [16–20].”
From Acceptance and perceived usefulness of digital health services in the management of chronic urticaria: a survey of patients and physicians (2025) · cites this paper as [16]
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Ly, S., Runacres, F., & Poon, P. (2021) · BMC Health Services Research · doi:10.1186/s12913-021-06934-y · Cited by 98 · cited 1× · see citing works
“29 The present study describes for the first time the patient journey for individuals with CSU in Germany.”
Simonsmeier, B. A., Flaig, M., Simacek, T., & Schneider, M. (2022) · Health Psychology Review · doi:10.1080/17437199.2021.1967184 · Cited by 81 · see citing works
Weller, K., Viehmann, K., Bräutigam, M., Krause, K., Siebenhaar, F., Zuberbier, T., & Maurer, M. (2012) · JDDG: Journal der Deutschen Dermatologischen Gesellschaft · doi:10.1111/j.1610-0387.2011.07822.x · Cited by 38 · see citing works
Self-citationMehring, M., Donnachie, E., Bonke, F. C., Werner, C., & Schneider, A. (2017) · Diabetology & Metabolic Syndrome · doi:10.1186/s13098-017-0236-y · Cited by 26 · see citing works
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Hindelang, M., Zink, A., Knitza, J., Darkow, R., Welcker, M., Biedermann, T., May, S., & Muehlensiepen, F. (2025) · BMC Health Services Research · doi:10.1186/s12913-025-13043-7 · Cited by 4 · see citing works
“Such documentation, such as a urticaria diary (and possibly photos), can be very helpful in diagnosing and treating the disease [16–20].”
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- Authors
- Maurer, M., Augustin, M., Bauer, S., Ekanayake‐Bohlig, S., Kircher, P., Knöll, A., Kramps, T., Kurzen, H., Laemmel, S., Novak, N., Oppel, E., Pirouzmandi, L., Rebhan, M., Reimnitz, U., Richter‐Huhn, G., Schwarz, B., Schwichtenberg, U., Staubach, P., Termeer, C., Thielen, A., Varga, K., von Bubnoff, D., Zink, A., Gmeiner, B., & Nathan, P.
- Affiliations
- Humboldt-Universität zu Berlin (DE)
- University Medical Center Hamburg-Eppendorf (DE)
- Urtikaria‐Helden, gUG Koblenz Germany
- MENSINGDERMA Research Hamburg Germany
- St. Ulrich‐Apotheke Peißenberg Germany
- Hautarztpraxis Falkensee Germany
- Novartis (Germany) (DE)
- Haut‐ und Laerzentrum Freising Freising Germany
- Deutscher Allergie‐ und Asthmabund e.V. – DAAB Berlin Germany
- University Hospital Bonn (DE)
- LMU Klinikum (DE)
- Praxis Nettlingen Sölde Germany
- Novartis (Switzerland) (CH)
- Praxis Schwerin Schwerin Germany
- Hautarztpraxis Dresden Dresden Germany
- Haut- und Lasercentrum Potsdam (DE)
- Derma‐Nord Hautarztpraxis Bremen Bremen Germany
- University Medical Center of the Johannes Gutenberg University Mainz (DE)
- University of Freiburg (DE)
- Praxis Seifhennersdorf Seifhennersdorf Germany
- Department Dermatology, Allergology and Venereology University Medical Center Lübeck Lübeck Germany
- Karolinska Institutet (SE)
- Corresponding author
- Maurer, Marcus
- ORCID
- Venue
- Journal of the European Academy of Dermatology and Venereology
- Publisher
- Wiley
- Published
- 2024-03-05
- Volume
- 38
- Issue
- 11
- Pages
- 2093-2101
- ISSN
- 0926-9959 (ISSN-L)
- 1468-3083
- OpenAlex
- W4392458492
- Cited by
- 15
- References
- 4
- Citations by year
- 2026: 7 · 2025: 7 · 2024: 1
- FWCI
- 4.86
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Journal of the European Academy of Dermatology and Venereology (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- Refubium (Universitätsbibliothek der Freien Universität Berlin) (submittedVersion, cc-by-nc)
- mediaTUM (Technical University of Munich) (submittedVersion)
- The Novartis Repository (Novartis) (submittedVersion)
- Fraunhofer-Publica (Fraunhofer-Gesellschaft) (submittedVersion)
- Universitätsbibliothek der FU Berlin Hochschulschriftenstelle u. Dokumentenserver
- Funders
- Novartis Pharma
- Topics
- Health Sciences › Medicine › Rheumatology › Urticaria and Related Conditions
- Health Sciences › Medicine › Epidemiology › Chronic Disease Management Strategies
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Clinical practice guidelines implementation
- Keywords
- chronic spontaneous urticaria, patient journey, disease management programs, patient education, medical education, guideline implementation, disease control, delayed diagnosis, co-creation, patient burden, Germany
- MeSH terms
- Chronic Urticaria, Female, Germany, Humans, Models, Theoretical, Patient Education as Topic, Disease Management
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