{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T18:54:05Z","timestamp":1782845645525,"version":"3.54.5"},"reference-count":12,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Form Res"],"abstract":"\n Background<\/jats:title>\n The mainstay of treatment for cervical dystonia (CD) is regular botulinum toxin injections every 3-4 months. Clinical evaluation of response is dependent on the patient\u2019s recall of how well symptoms responded to the previous injection. A mobile health app could assist both patients and health care professionals to monitor treatment benefits and side effects to assist with the selection of muscle and toxin dose to be injected at the next visit. The DystoniaDiary is a bespoke electronic health journal for monitoring symptoms of CD and response to treatment.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n The objective of this study was to assess the acceptability and utility of the DystoniaDiary in patients with CD treated with botulinum toxins as part of their usual care.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n In this open-label, single-center, single-arm observational study, patients attending a botulinum toxin injection clinic were invited to download the DystoniaDiary app. Patients selected up to 3 of their most troublesome CD symptoms (from a predefined list) 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 wearing off of response to injected botulinum toxin and responses to the Cervical Dystonia Impact Profile (CDIP-58) questionnaire at baseline and week 6 were also recorded in the app.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n A total of 34 patients installed DystoniaDiary. Twenty-five patients (25\/34, 74%) recorded data for \u226512 weeks and 21 patients (21\/34, 62%) for \u226516 weeks. Median time between the first and last data input was 140 days with a median of 13 recordings per patient. User experience questionnaires at weeks 4 and 12 (20 respondents) indicated that the majority of respondents found the DystoniaDiary app easy to install and use, liked using it, 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). There was interindividual variation in patients\u2019 perceptions of control of their symptoms after botulinum toxin injection. Response to treatment was apparent in the symptom control scores for some patients, whereas the severity of other patients\u2019 symptoms did not appear to change after treatment.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n This observational study demonstrated that the DystoniaDiary app was perceived as useful and acceptable for a large proportion of this sample of patients with CD attending a botulinum toxin clinic. Patients with CD appear to be willing to regularly record symptom severity for at least the duration of a botulinum injection treatment cycle (12-16 weeks). This app may be useful in monitoring and optimizing individual patient responses to botulinum toxin injection.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/45986","type":"journal-article","created":{"date-parts":[[2023,7,4]],"date-time":"2023-07-04T03:50:13Z","timestamp":1688442613000},"page":"e45986","source":"Crossref","is-referenced-by-count":1,"title":["A Bespoke Electronic Health Journal for Monitoring Response to Botulinum Toxin in Treatment of Cervical Dystonia: Open-Label Observational Study of User Experience"],"prefix":"10.2196","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5175-9020","authenticated-orcid":false,"given":"Colin","family":"Edwards","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2292-4103","authenticated-orcid":false,"given":"Rebecca","family":"Borton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7325-594X","authenticated-orcid":false,"given":"Anita","family":"Ross","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8865-840X","authenticated-orcid":false,"given":"Fiona","family":"Molloy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2023,8,23]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","DOI":"10.1007\/s00702-012-0887-7"},{"key":"ref2","unstructured":"DysportMedicines Information Online202208162022-08-30https:\/\/www.medicines.ie\/medicines\/list\/all\/page-1\/per-page-25?query=Dysport"},{"key":"ref3","unstructured":"BotoxMedicines Information Online202204082022-08-30https:\/\/www.medicines.ie\/medicines\/list\/all\/page-1\/per-page-25?query=Botox"},{"key":"ref4","unstructured":"XeominMedicines Information Online202205162022-08-30https:\/\/www.medicines.ie\/medicines\/list\/all\/page-1\/per-page-25?query=Xeomin"},{"key":"ref5","doi-asserted-by":"publisher","DOI":"10.1016\/s0140-6736(86)92070-2"},{"key":"ref6","unstructured":"NielsenJHow many test users in a usability study?NN\/g Nielsen Norman Group20122022-01-19https:\/\/www.nngroup.com\/articles\/how-many-test-users\/"},{"key":"ref7","unstructured":"BudiuRMoranKHow many participants for quantitative usability studies: a summary of sample-size recommendationsNN\/g Nielsen Norman Group20212022-01-19https:\/\/www.nngroup.com\/articles\/summary-quant-sample-sizes\/"},{"key":"ref8","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000142962.11881.26"},{"key":"ref9","doi-asserted-by":"publisher","DOI":"10.1136\/bmjinnov-2021-000875"},{"key":"ref10","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.congress-2022.832"},{"key":"ref11","doi-asserted-by":"publisher","DOI":"10.1016\/j.healun.2020.01.492"},{"key":"ref12","unstructured":"My Dystonia - your personal diaryDystonia Europe2023-04-27https:\/\/dystonia-europe.org\/projects-1\/projects\/mydystonia\/"}],"container-title":["JMIR Formative Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/formative.jmir.org\/2023\/1\/e45986","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T17:52:06Z","timestamp":1782841926000},"score":1,"resource":{"primary":{"URL":"https:\/\/formative.jmir.org\/2023\/1\/e45986"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,8,23]]},"references-count":12,"URL":"https:\/\/doi.org\/10.2196\/45986","relation":{"has-preprint":[{"id-type":"doi","id":"10.2196\/preprints.45986","asserted-by":"object"}]},"ISSN":["2561-326X"],"issn-type":[{"value":"2561-326X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,8,23]]}}}