Patient involvement in the development of PROMs within the MS Field: A systematic review
This review reports on the development of patient-reported outcome measures (PROMs), published within the past ten years, for people with multiple sclerosis (PwMS). Moreover, this review evaluates the extent to which patient participation was integrated in the development of the PROMs. A systematic...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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The Beryl Institute
2022-04-01
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| Series: | Patient Experience Journal |
| Subjects: | |
| Online Access: | https://pxjournal.org/journal/vol9/iss1/20 |
| _version_ | 1818006720234913792 |
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| author | Signe Reitzel Melinda Magyari Lasse Skovgaard Maria Kristiansen |
| author_facet | Signe Reitzel Melinda Magyari Lasse Skovgaard Maria Kristiansen |
| author_sort | Signe Reitzel |
| collection | DOAJ |
| description | This review reports on the development of patient-reported outcome measures (PROMs), published within the past ten years, for people with multiple sclerosis (PwMS). Moreover, this review evaluates the extent to which patient participation was integrated in the development of the PROMs. A systematic review was conducted, and four relevant articles were extracted, from which nine PROMs were identified. Patient involvement in the development phase was identified in three PROMs. The results emphasize the need for more patient involvement in the development of new MS-specific PROMs to ensure that the measures reflect the needs and priorities of PwMS.
<strong>Experience Framework</strong>
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (<a href="https://www.theberylinstitute.org/ExperienceFramework">https://www.theberylinstitute.org/ExperienceFramework</a>). <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Policy%20%26%20Measurement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-PolicyMeasurement">Access other resources</a> related to this lens.</li> </ul> |
| first_indexed | 2024-04-14T05:05:13Z |
| format | Article |
| id | doaj.art-2088f177d859425a8aae34586bc517f2 |
| institution | Directory Open Access Journal |
| issn | 2372-0247 |
| language | English |
| last_indexed | 2024-04-14T05:05:13Z |
| publishDate | 2022-04-01 |
| publisher | The Beryl Institute |
| record_format | Article |
| series | Patient Experience Journal |
| spelling | doaj.art-2088f177d859425a8aae34586bc517f22022-12-22T02:10:42ZengThe Beryl InstitutePatient Experience Journal2372-02472022-04-0191Patient involvement in the development of PROMs within the MS Field: A systematic reviewSigne ReitzelMelinda MagyariLasse SkovgaardMaria KristiansenThis review reports on the development of patient-reported outcome measures (PROMs), published within the past ten years, for people with multiple sclerosis (PwMS). Moreover, this review evaluates the extent to which patient participation was integrated in the development of the PROMs. A systematic review was conducted, and four relevant articles were extracted, from which nine PROMs were identified. Patient involvement in the development phase was identified in three PROMs. The results emphasize the need for more patient involvement in the development of new MS-specific PROMs to ensure that the measures reflect the needs and priorities of PwMS. <strong>Experience Framework</strong> This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (<a href="https://www.theberylinstitute.org/ExperienceFramework">https://www.theberylinstitute.org/ExperienceFramework</a>). <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Policy%20%26%20Measurement%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-PolicyMeasurement">Access other resources</a> related to this lens.</li> </ul>https://pxjournal.org/journal/vol9/iss1/20systematic reviewpatient-reported outcomepatient involvementmultiple sclerosis |
| spellingShingle | Signe Reitzel Melinda Magyari Lasse Skovgaard Maria Kristiansen Patient involvement in the development of PROMs within the MS Field: A systematic review Patient Experience Journal systematic review patient-reported outcome patient involvement multiple sclerosis |
| title | Patient involvement in the development of PROMs within the MS Field: A systematic review |
| title_full | Patient involvement in the development of PROMs within the MS Field: A systematic review |
| title_fullStr | Patient involvement in the development of PROMs within the MS Field: A systematic review |
| title_full_unstemmed | Patient involvement in the development of PROMs within the MS Field: A systematic review |
| title_short | Patient involvement in the development of PROMs within the MS Field: A systematic review |
| title_sort | patient involvement in the development of proms within the ms field a systematic review |
| topic | systematic review patient-reported outcome patient involvement multiple sclerosis |
| url | https://pxjournal.org/journal/vol9/iss1/20 |
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