Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study
Abstract Background A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regardin...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-04-01
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| Series: | BMC Neurology |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12883-022-02663-9 |
| _version_ | 1817988972591185920 |
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| author | Anna Sippel Jutta Scheiderbauer Désirée Eklund Sigrid Arnade Stephan Schmidt Ingo Kleiter Rebecca Morrison Christopher Kofahl Christoph Heesen |
| author_facet | Anna Sippel Jutta Scheiderbauer Désirée Eklund Sigrid Arnade Stephan Schmidt Ingo Kleiter Rebecca Morrison Christopher Kofahl Christoph Heesen |
| author_sort | Anna Sippel |
| collection | DOAJ |
| description | Abstract Background A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS. Methods A mixed-methods approach was applied. A total of 69 participants visited the German “Patient Experiences with MS (PExMS)” website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis. Results Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people’s experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies. Conclusions The findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments. |
| first_indexed | 2024-04-14T00:40:35Z |
| format | Article |
| id | doaj.art-7ec2e1dc60e94fe88665f3556a1df54f |
| institution | Directory Open Access Journal |
| issn | 1471-2377 |
| language | English |
| last_indexed | 2024-04-14T00:40:35Z |
| publishDate | 2022-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Neurology |
| spelling | doaj.art-7ec2e1dc60e94fe88665f3556a1df54f2022-12-22T02:22:11ZengBMCBMC Neurology1471-23772022-04-0122111410.1186/s12883-022-02663-9Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods studyAnna Sippel0Jutta ScheiderbauerDésirée EklundSigrid Arnade1Stephan Schmidt2Ingo Kleiter3Rebecca MorrisonChristopher Kofahl4Christoph Heesen5Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE)LEBENSNERV – Stiftung zur Förderung der psychosomatischen MS-ForschungNeurologische Gemeinschaftspraxis, Gesundheitszentrum St. JohannesMarianne-Strauß-Klinik, Behandlungszentrum Kempfenhausen für Multiple Sklerose Kranke gGmbHInstitute of Medical Sociology, University Medical Center Hamburg-Eppendorf (UKE)Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE)Abstract Background A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS. Methods A mixed-methods approach was applied. A total of 69 participants visited the German “Patient Experiences with MS (PExMS)” website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis. Results Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people’s experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies. Conclusions The findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments.https://doi.org/10.1186/s12883-022-02663-9Multiple sclerosisDecision makingWeb-based experiential informationPatient experiences |
| spellingShingle | Anna Sippel Jutta Scheiderbauer Désirée Eklund Sigrid Arnade Stephan Schmidt Ingo Kleiter Rebecca Morrison Christopher Kofahl Christoph Heesen Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study BMC Neurology Multiple sclerosis Decision making Web-based experiential information Patient experiences |
| title | Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study |
| title_full | Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study |
| title_fullStr | Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study |
| title_full_unstemmed | Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study |
| title_short | Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study |
| title_sort | development and evaluation of a website with patients experiences of multiple sclerosis a mixed methods study |
| topic | Multiple sclerosis Decision making Web-based experiential information Patient experiences |
| url | https://doi.org/10.1186/s12883-022-02663-9 |
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