About the survey

Our German member organization Urtikaria-Helden (Urticaria Heroes) conducted a survey to showcase how people affected by urticaria rate current treatment methods from their perspective and their limitations with this disease. The survey focused primarily on Germany but received answers from other countries and regions. Here’s an expanded look at the findings.

The survey wasn’t merely an academic exercise but a passionate endeavor to capture the intricate nuances of living with urticaria.

The primary goal of the Urticaria Heroes is to assist those affected by the condition. This survey was designed to gauge how individuals with urticaria perceive current treatment methods and their limitations due to the disease. The Urticaria Heroes hope to advance urticaria research and develop more effective treatment methods by raising public awareness and influencing the medical community and policymakers. This also includes the development of better medications and faster approval to reimburse costs for off-label use medications.

In addition, the recognition of a DoD (degree of disability) of at least 50% by the state offices for health and social affairs should be sought in the case of severe urticaria.

This survey demonstrates the massive limitations those affected have due to urticaria. This survey is also intended to determine because not enough educational work is being done about this disease.

Key Findings

  • Demographics: Most respondents were female, with a significant number in the age range of 30-49. Responses came from various states, with North Rhine-Westphalia having the highest representation.
  • Duration of Urticaria: Many respondents have lived with urticaria for 1-5 years, but a notable number have had the condition for over 20 years.
  • Types of Urticaria: Chronic spontaneous urticaria was the most commonly reported type. Many respondents were unsure of the triggers for their condition, highlighting the need for better patient education.
  • Treatment & Diagnosis: Many respondents felt dermatologists did not take them seriously. Many were prescribed antihistamines, with mixed results regarding their effectiveness.
  • Feedback on Dermatologists: The overall rating for dermatologists was 3.3 out of 5, indicating room for improvement in patient care. Many patients felt inadequately informed about their condition and its treatment.

Demographics: A Closer Look

The survey drew a diverse range of respondents. While a significant majority were female, spanning the age range of 30-49, it’s essential to note the representation from various states, with North Rhine-Westphalia leading the pack. Such diversity underscores the universal reach of urticaria, affecting individuals across different backgrounds and regions.

While the survey attracted a diverse demographic, most respondents were female, primarily aged 30-49. However, the representation from various states, especially the notable presence from North Rhine-Westphalia, is a testament to urticaria’s indiscriminate nature. It affects individuals from all walks of life, transcending age, gender, and geographical boundaries.

Duration & Types of Urticaria

The longevity of urticaria in patients’ lives varied, with many having lived with the condition for 1-5 years. However, a striking number reported having the disease for over two decades, highlighting the chronic nature of urticaria for some.

Regarding types, Chronic spontaneous urticaria emerged as the predominant form. Yet, many respondents expressed uncertainty about their condition’s triggers. This points to a pressing need for enhanced patient education and awareness campaigns.

Treatment, Diagnosis, and Patient Experience

The patient-doctor relationship is pivotal in managing any medical condition. However, many respondents felt their concerns were dismissed or not taken seriously by dermatologists. While antihistamines were the most commonly prescribed medication, their effectiveness varied among patients.

Feedback from dermatologists revealed an average rating of 3.3 out of 5. This suggests substantial room for improvement in patient care, communication, and treatment strategies.

The Many Facets of Urticaria

The survey revealed a spectrum of experiences regarding the duration and types of urticaria. Many respondents have been navigating the challenges of urticaria for 1-5 years. Yet, a poignant revelation was the segment of participants who’ve endured the condition for over 20 years, underscoring the chronic and relentless nature of urticaria for some.

Chronic spontaneous urticaria was identified as the most prevalent type. However, the cloud of uncertainty regarding triggers for many respondents is a clarion call for more robust patient education initiatives and awareness drives.

Navigating the Medical Landscape

The dynamics between patients and their healthcare providers play a pivotal role in disease management. Alarmingly, a significant chunk of respondents felt their voices were muted or dismissed by dermatologists. While antihistamines emerged as the go-to prescription, their efficacy was a mixed bag among patients.

The feedback on dermatologists, with an average rating hovering around 3.3 out of 5, is a glaring indicator of the chasm in patient care and communication. This feedback catalyzes introspection within the medical community, urging a shift towards more empathetic and patient-centric care.

Conclusion

The findings from the Urticaria Heroes 2023 Survey underscore the challenges faced by those with urticaria and the need for better patient care, education, and research. By understanding the experiences of those affected, we can work towards a future where urticaria is better understood and managed.

The Urticaria Heroes 2023 Survey vividly depicts the challenges, hopes, and needs of those living with urticaria. The findings underscore the urgent need for better patient care, more in-depth research, and comprehensive patient education.

By delving deep into these experiences, we can collectively pave the way for a future where urticaria is better understood, managed, and treated. The journey may be long, but with collective effort and understanding, a brighter future for urticaria patients is within reach.

Looking Ahead: The Path to a Brighter Tomorrow

The insights from the Urticaria Heroes 2023 Survey are both a revelation and a call to action. They underscore the pressing need for a multi-pronged approach: enhanced patient care, rigorous research, and holistic patient education.

By immersing ourselves in these narratives, we can chart a course toward a future where urticaria is not just a footnote in medical textbooks but a condition understood, managed, and treated with the depth and empathy it warrants. The road ahead may be fraught with challenges, but with concerted efforts and unwavering commitment, a more informed and compassionate world for urticaria patients is on the horizon.

Download the original report.

The original report with all the data collected and explained from the survey is available to download (in German) through the button below.

Download the report

We encourage you to contact Urtikaria-Helden (https://urtikaria-helden.de/) for more information on the results and how to work to implement solutions to all these unmet needs.

We want to thank Urtikaria-Helden for allowing GAAPP to promote this survey internationally and showcase the results to the global community.