Objective: A pilot study to determine the acceptability of a novel DystoniaDiary application in patients with Cervical Dystonia (CD) attending a specialist clinic.

Background: The mainstay of treatment for CD is botulinum toxin injections every 3-4 months. Clinical evaluation of response is dependent on the patient’s recall of how well symptoms responded to the previous injection.A mobile health application could assist in monitoring both benefits and side effects to assist with selection of muscle and toxin dose at the next visit.

Method: A mobile app (DystoniaDiary) was developed for the collection of patient-reported symptoms of CD based on questions derived from the validated Cervical Dystonia Impact Profile (CDIP 58 ) questionnaire. Patients gave informed consent. These patients attend a specialist botulinum toxin clinic every 3-4 months and are reviewed by the same neurologist. All injections are administered under EMG guidance. The DystoniaDiary was installed as an application (‘’app”) on the patient’s smartphone/tablet device. Patients were prompted every 3 days to record the level of symptom control. Patient opinion and experience were assessed by questionnaire at weeks 4 and 12.The data collected were reviewed to assess its usefulness as a patient-clinician interface for evaluation of post-injection outcomes.

Results: 34 patients used the DystoniaDiary mobile app on at least one occasion. 25 patients (74%) recorded data for ≥12 weeks and 21 patients (62%) for ≥16 weeks. Median time between first and last data input was 140 days with a median of 13 recordings/patient. User experience questionnaires at Weeks 4 and 12 (20 respondents) indicated that the majority of respondents found the Dystonia Diary app easy to use, would recommend it to others (19/20) and wished to continue using it (16/20). A smaller proportion indicated that the DystoniaDiary gave a greater sense of control in managing their CD (13/20). Response to treatment was apparent in the symptom control scores of some patients whereas the severity of other patients’ symptoms did not appear to change during treatment.

Conclusion: This pilot study demonstrates that there is a potential for a positive impact from mobile health technology in the management of CD. Further long term studies including real time feedback are needed to identify best practices and evaluate the sustainability of technology on the treatment of CD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-novel-mobile-application-for-monitoring-the-response-to-botulinum-toxin-in-patients-with-cervical-dystonia/