Monika Benso
Executive Director, Dystonia Europe
Cervical dystonia affects daily life in significant ways. Understanding the patient journey helps improve care, support and awareness of this condition.
Living with dystonia presents unique challenges, making it essential to understand the patient’s journey for better care and support. In collaboration with the European Reference Network for Neurological Diseases (ERN-RND) and with support from Ipsen, Dystonia Europe has developed the Cervical Dystonia Patient Journey to highlight the experiences of individuals affected by this condition.
What is cervical dystonia?
Dystonia is a movement disorder characterised by sustained or intermittent muscle contractions, leading to abnormal, often repetitive movements or postures. Cervical dystonia (CD) is the most common form of focal dystonia in adults, typically beginning between ages 30 and 50 and progressively worsening over five years. This painful condition causes involuntary neck muscle contractions, leading to the head twisting, tilting or turning uncontrollably.
The role of patient journeys
Patient Journeys serve as infographic tools that visualise patients’ needs throughout their rare disease care. Designed from the patient’s perspective, these journeys help clinicians address care gaps effectively. The Cervical Dystonia Patient Journey Map (CDPJM) provides a comprehensive view of the patient experience, spanning pre-diagnosis to long-term treatment.
Designed from the patient’s
perspective, these journeys help
clinicians address care gaps effectively.
Development of the patient journey map
To develop the CDPJM, a survey was conducted with 15 individuals affected by cervical dystonia, followed by validation through an expert-patient focus group. Qualitative analysis identified five key stages of the patient journey: (1) symptom onset; (2) diagnosis and therapeutic relationship with healthcare professionals (HCPs); (3) initiation of care for cervical dystonia; (4) start of treatment; (5) living with treated cervical dystonia
Within these stages, gaps in care and barriers to treatment were identified. The Patient Journey Map highlights critical updates needed in healthcare systems, including improved communication, accessible high-quality information and clear treatment pathways.
Emphasising needs of the dystonia community
By understanding the dystonia patient journey, we can enhance early detection, improve access to specialised care and optimise treatment approaches. Our goal is to empower individuals with dystonia, equip healthcare providers with valuable insights and advocate for policies that prioritise the needs of the dystonia community.
Now available in 12 languages, the complete Patient Journey can be accessed here: ERN-RND Patient Journeys.
For more information, visit Dystonia Europe.
