Objective: As part of the ongoing European Reference Networks for Rare Neurological Diseases (ERN-RND) program, we aimed to develop a cervical dystonia patient journey map (CDPJM) that describes the holistic patient experience from pre-diagnosis through to long-term treatment.

Background: Patient experience and satisfaction have been demonstrated to be the single most important aspect in assessing the quality of healthcare. Patient journey maps are increasingly used as a tool that enables healthcare providers to refine their service provision to best meet patient needs.

Method: The CDPJM was developed in 2 stages; a survey of 15 patients with cervical dystonia (CD) informed the design of the CDPJM, which was then refined and validated by an expert-patient focus group.

Results: Qualitative analysis supported 5 stages of the patient journey: symptom onset, diagnosis and therapeutic relationship with healthcare professionals, initiation of CD care, start of treatment, and living with treated CD. Following symptom onset, patients described multiple visits to their family doctor who prescribed pain killers and muscle relaxants, and referred their patient to up to 10 specialists for diagnosis. Over half (53.3%) had received ≥1 misdiagnosis. Patients reported relief upon correct diagnosis but a lack of understanding of the prognosis and treatment options; 46.7% said their neurologist did not spend enough time addressing their concerns. While botulinum toxin (BoNT) was consistently discussed as the main treatment option, some neurologists also mentioned physiotherapy, counselling, and other complementary approaches. However, patients were often left to seek complementary services themselves. Patients reported a ‘rollercoaster’ of relief with BoNT treatment with symptoms (and subsequent impact on daily life) returning towards the end of an injection cycle. “When BoNT works well I can return to an almost normal life … when the injections stop working so well, I have to rest more and avoid going to work and experience life restrictions.”

Conclusion: We present the first patient journey map for CD that can be used to guide local service mapping and to compare current provision with what patients say they want and need.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/development-of-a-patient-journey-map-for-people-living-with-cervical-dystonia/