JMIR Publications

ABSTRACT

The DystoniaDiary is a bespoke electronic health journal for cervical dystonia (CD). Patients selected up to three of their most troublesome CD symptoms and were prompted every 3 days to rate the control of these symptoms on a scale from 0 (very badly) to 100 (very well). Dates of onset and offset of response to injected botulinum toxin and CDIP-58 questionnaire data could also be added. The objective of this open-label, single-centre, single-arm observational study was to assess the acceptability and utility of the DystoniaDiary in CD patients treated with injected botulinum toxins as part of their usual care. 34 patients installed DystoniaDiary. 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 install and use, liked using it and 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 despite injected treatment. In conclusion, the DystoniaDiary application was useful and acceptable for a large proportion of this sample of CD patients attending a botulinum toxin injection clinic. Patients appear to be willing to regularly record symptom severity for at least the duration of a botulinum injection treatment cycle (12-16 weeks). This application may be useful in monitoring and optimising individual patient responses to botulinum toxin injection.