Development and usability testing of your MS questionnaire: A patient-based digital tool to monitor symptoms of multiple sclerosis
Objectives We describe the development of Your Multiple Sclerosis Questionnaire and present the real-world usability testing results of Your Multiple Sclerosis Questionnaire. Methods The Your Multiple Sclerosis Questionnaire tool was developed in four stages to collect feedback from people living wi...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2023-05-01
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| Series: | Digital Health |
| Online Access: | https://doi.org/10.1177/20552076231173531 |
| _version_ | 1827950402272755712 |
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| author | Gavin Giovannoni Enrique Alvarez Ellen Tutton Olaf Hoffmann Yan Xu Patrick Vermersch Celia Oreja-Guevara Maria Trojano Ralf Gold René Robles-Cedeño Mudeer Khwaja Bianca Stadler Jo Vandercappellen Tjalf Ziemssen |
| author_facet | Gavin Giovannoni Enrique Alvarez Ellen Tutton Olaf Hoffmann Yan Xu Patrick Vermersch Celia Oreja-Guevara Maria Trojano Ralf Gold René Robles-Cedeño Mudeer Khwaja Bianca Stadler Jo Vandercappellen Tjalf Ziemssen |
| author_sort | Gavin Giovannoni |
| collection | DOAJ |
| description | Objectives We describe the development of Your Multiple Sclerosis Questionnaire and present the real-world usability testing results of Your Multiple Sclerosis Questionnaire. Methods The Your Multiple Sclerosis Questionnaire tool was developed in four stages to collect feedback from people living with MS (plwMS), patient organizations, and clinicians on content, format, and applicability. To assess its usability, 13 clinicians across 7 countries completed an online survey after using the tool with plwMS in a total of 261 consultations from September, 2020 to July, 2021. Results The initial Your Multiple Sclerosis Questionnaire version was based on findings from previous research developing MSProDiscuss™, a clinician-completed tool. Subsequently, insights from plwMS obtained during cognitive debriefing, patient councils and advisory boards led to changes including the addition of mood and sexual problems and the definition of relapse. All 13 clinicians completed the individual survey, whereas 10 clinicians completed the final survey. Clinicians “strongly agreed” or “agreed” that Your Multiple Sclerosis Questionnaire was easy to use and understand (98.5%; 257/261 patient consultations). The clinicians were willing to use the tool again with the same patient (98.1%; 256/261 patient consultations). All clinicians who completed the final survey (100%; 10/10) reported the tool to have a positive influence on their clinical practice, helped patients engage with their MS, facilitated discussion with patients, and complemented neurological assessment. Conclusion Your Multiple Sclerosis Questionnaire benefits both plwMS and clinicians by facilitating a structured discussion and engaging the plwMS to self-monitor and self-manage. Your Multiple Sclerosis Questionnaire is compatible with telemedicine practice and integration of the tool into electronic health records would enable tracking of the disease evolution and individual monitoring of MS symptoms over time. |
| first_indexed | 2024-04-09T13:25:30Z |
| format | Article |
| id | doaj.art-986ea502ef2f4e06bd814714e1df4917 |
| institution | Directory Open Access Journal |
| issn | 2055-2076 |
| language | English |
| last_indexed | 2024-04-09T13:25:30Z |
| publishDate | 2023-05-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Digital Health |
| spelling | doaj.art-986ea502ef2f4e06bd814714e1df49172023-05-10T11:38:16ZengSAGE PublishingDigital Health2055-20762023-05-01910.1177/20552076231173531Development and usability testing of your MS questionnaire: A patient-based digital tool to monitor symptoms of multiple sclerosisGavin Giovannoni0Enrique Alvarez1Ellen Tutton2Olaf Hoffmann3Yan Xu4Patrick Vermersch5Celia Oreja-Guevara6Maria Trojano7Ralf Gold8René Robles-Cedeño9Mudeer Khwaja10Bianca Stadler11Jo Vandercappellen12Tjalf Ziemssen13 Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, UK University of Colorado School of Medicine, Aurora, CO, USA Shift.ms, Chelmsford, UK , Neuruppin, Germany Multiple Sclerosis Center, Department of Neurology, Peking Union Medical College Hospital, Peking Union Medical College, Chinese Academy of Medical Sciences, Beijing, People's Republic of China University of Lille, Inserm UMR U1172 LilNCog, CHU Lille, FHU Precise, Lille, France Multiple Sclerosis Center, University Hospital San Carlos, Madrid, Spain Department of Basic Medical Science, Neurosciences and Sense Organs, University of Bari, Bari, Italy Department of Neurology, St Josef-Hospital/Ruhr-University Bochum, Bochum, Germany Neuroimmunology and Multiple Sclerosis Unit, Girona, Spain , Basel, Switzerland , Basel, Switzerland , Basel, Switzerland Center of Clinical Neuroscience, Department of Neurology, Carl Gustav Carus University Clinic, Technische Universität Dresden, Dresden, GermanyObjectives We describe the development of Your Multiple Sclerosis Questionnaire and present the real-world usability testing results of Your Multiple Sclerosis Questionnaire. Methods The Your Multiple Sclerosis Questionnaire tool was developed in four stages to collect feedback from people living with MS (plwMS), patient organizations, and clinicians on content, format, and applicability. To assess its usability, 13 clinicians across 7 countries completed an online survey after using the tool with plwMS in a total of 261 consultations from September, 2020 to July, 2021. Results The initial Your Multiple Sclerosis Questionnaire version was based on findings from previous research developing MSProDiscuss™, a clinician-completed tool. Subsequently, insights from plwMS obtained during cognitive debriefing, patient councils and advisory boards led to changes including the addition of mood and sexual problems and the definition of relapse. All 13 clinicians completed the individual survey, whereas 10 clinicians completed the final survey. Clinicians “strongly agreed” or “agreed” that Your Multiple Sclerosis Questionnaire was easy to use and understand (98.5%; 257/261 patient consultations). The clinicians were willing to use the tool again with the same patient (98.1%; 256/261 patient consultations). All clinicians who completed the final survey (100%; 10/10) reported the tool to have a positive influence on their clinical practice, helped patients engage with their MS, facilitated discussion with patients, and complemented neurological assessment. Conclusion Your Multiple Sclerosis Questionnaire benefits both plwMS and clinicians by facilitating a structured discussion and engaging the plwMS to self-monitor and self-manage. Your Multiple Sclerosis Questionnaire is compatible with telemedicine practice and integration of the tool into electronic health records would enable tracking of the disease evolution and individual monitoring of MS symptoms over time.https://doi.org/10.1177/20552076231173531 |
| spellingShingle | Gavin Giovannoni Enrique Alvarez Ellen Tutton Olaf Hoffmann Yan Xu Patrick Vermersch Celia Oreja-Guevara Maria Trojano Ralf Gold René Robles-Cedeño Mudeer Khwaja Bianca Stadler Jo Vandercappellen Tjalf Ziemssen Development and usability testing of your MS questionnaire: A patient-based digital tool to monitor symptoms of multiple sclerosis Digital Health |
| title | Development and usability testing of your MS questionnaire: A patient-based digital tool to monitor symptoms of multiple sclerosis |
| title_full | Development and usability testing of your MS questionnaire: A patient-based digital tool to monitor symptoms of multiple sclerosis |
| title_fullStr | Development and usability testing of your MS questionnaire: A patient-based digital tool to monitor symptoms of multiple sclerosis |
| title_full_unstemmed | Development and usability testing of your MS questionnaire: A patient-based digital tool to monitor symptoms of multiple sclerosis |
| title_short | Development and usability testing of your MS questionnaire: A patient-based digital tool to monitor symptoms of multiple sclerosis |
| title_sort | development and usability testing of your ms questionnaire a patient based digital tool to monitor symptoms of multiple sclerosis |
| url | https://doi.org/10.1177/20552076231173531 |
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