| Autor: |
O'Neill, Jessica, Ayer, Mavis G., Colhoun, Samantha R., Daykin, Nicola, Hamill, Brenda, Fei, Maria, Florio, Jordanne, Pulcini, Serena, Thomson, Alison |
| Předmět: |
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| Zdroj: |
International Journal of MS Care; 2020, Vol. 22 Issue S2, p66-66, 1/3p |
| Abstrakt: |
Background: Multiple sclerosis (MS) is a progressive neurologic disease that can significantly impact quality of life (QoL). MS is typically diagnosed between the ages of 20 and 40, affecting individuals during critical employment years. Continued employment in people with MS (PwMS) has been shown to be associated with higher QoL and better disease management. Objectives: This study aimed to identify unmet communication and disease education needs in PwMS to empower informed decisions, enable self-management, and to maintain independence for as long as possible. In particular, we sought to gain an understanding of the impact of MS on employment and highlight the main challenges for people to remain in work. Methods: In October 2018 a roundtable meeting of patient representatives, PwMS, carers, and MS nurses agreed on key themes associated with maintaining independence. In 2019, an official project steering group formed, and 2 studies for PwMS were codeveloped: a qualitative online patient community activity and a quantitative online survey. The qualitative activity used Ipsos' Syndicated MS Online Patient Community (a consistent panel of PwMS), and the quantitative survey was recruited through the MS Trust monthly newsletter and Facebook group. Results were discussed and prioritized by the steering group. Results: Data were analyzed from 28 and 117 respondents with relapsing-remitting MS, from the Ipsos Syndicated MS Online Patient Community and quantitative survey, respectively. Data from the quantitative survey revealed the following: 66% of respondents "strongly/ somewhat" agreed their MS had prevented them from reaching their full potential, and had an impact on QoL, with 73% of participants reporting that their MS had a "very/slightly negative impact" on work life. Overall, 69% were in full- or part-time employment, with only 26% remaining in the same job, with the same hours, since their diagnosis. Data from this study will further explore the impact on work for PwMS. Conclusions: Findings from our study highlight the impact of MS on working life among participants. It is important to understand these issues in the wider MS population to prevent problems at work and future loss of work. [ABSTRACT FROM AUTHOR] |
| Databáze: |
Complementary Index |
| Externí odkaz: |
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