Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics
Background. Despite evidence of the potential importance of the role of health and lifestyle behaviours in multiple sclerosis (MS) outcomes, there has not been a significant focus on this area of research. Aim. We aimed to recruit an international sample of people with MS at baseline and over a five...
Saved in:
| Main Authors: | , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2013-01-01
|
| Series: | Neurology Research International |
| Online Access: | http://dx.doi.org/10.1155/2013/580596 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850235227547369472 |
|---|---|
| author | Emily J. Hadgkiss George A. Jelinek Tracey J. Weiland Naresh G. Pereira Claudia H. Marck Dania M. van der Meer |
| author_facet | Emily J. Hadgkiss George A. Jelinek Tracey J. Weiland Naresh G. Pereira Claudia H. Marck Dania M. van der Meer |
| author_sort | Emily J. Hadgkiss |
| collection | DOAJ |
| description | Background. Despite evidence of the potential importance of the role of health and lifestyle behaviours in multiple sclerosis (MS) outcomes, there has not been a significant focus on this area of research. Aim. We aimed to recruit an international sample of people with MS at baseline and over a five-year timeframe, examine their health and lifestyle behaviours, and determine the relationship of these behaviours to self-reported disability, disease activity, and quality of life. Methods. People with MS were recruited through web 2.0 platforms including interactive websites, social media, blogs, and forums and completed a comprehensive, multifaceted online questionnaire incorporating validated and researcher-derived tools. Results. 2519 participants met inclusion criteria for this study. This paper describes the study methodology in detail and provides an overview of baseline participant demographics, clinical characteristics, summary outcome variables, and health and lifestyle behaviours. The sample described is unique due to the nature of recruitment through online media and due to the engagement of the group, which appears to be well informed and proactive in lifestyle modification. Conclusion. This sample provides a sound platform to undertake novel exploratory analyses of the association between a variety of lifestyle factors and MS outcomes. |
| format | Article |
| id | doaj-art-10998bb212014c7ea1d7aa4cb1e13304 |
| institution | OA Journals |
| issn | 2090-1852 2090-1860 |
| language | English |
| publishDate | 2013-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Neurology Research International |
| spelling | doaj-art-10998bb212014c7ea1d7aa4cb1e133042025-08-20T02:02:20ZengWileyNeurology Research International2090-18522090-18602013-01-01201310.1155/2013/580596580596Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease CharacteristicsEmily J. Hadgkiss0George A. Jelinek1Tracey J. Weiland2Naresh G. Pereira3Claudia H. Marck4Dania M. van der Meer5Emergency Practice Innovation Centre, St Vincent’s Hospital, Melbourne, VIC 3065, AustraliaEmergency Practice Innovation Centre, St Vincent’s Hospital, Melbourne, VIC 3065, AustraliaEmergency Practice Innovation Centre, St Vincent’s Hospital, Melbourne, VIC 3065, AustraliaFaculty of Medicine, The University of Notre Dame Australia, Fremantle, WA 6959, AustraliaEmergency Practice Innovation Centre, St Vincent’s Hospital, Melbourne, VIC 3065, AustraliaEmergency Practice Innovation Centre, St Vincent’s Hospital, Melbourne, VIC 3065, AustraliaBackground. Despite evidence of the potential importance of the role of health and lifestyle behaviours in multiple sclerosis (MS) outcomes, there has not been a significant focus on this area of research. Aim. We aimed to recruit an international sample of people with MS at baseline and over a five-year timeframe, examine their health and lifestyle behaviours, and determine the relationship of these behaviours to self-reported disability, disease activity, and quality of life. Methods. People with MS were recruited through web 2.0 platforms including interactive websites, social media, blogs, and forums and completed a comprehensive, multifaceted online questionnaire incorporating validated and researcher-derived tools. Results. 2519 participants met inclusion criteria for this study. This paper describes the study methodology in detail and provides an overview of baseline participant demographics, clinical characteristics, summary outcome variables, and health and lifestyle behaviours. The sample described is unique due to the nature of recruitment through online media and due to the engagement of the group, which appears to be well informed and proactive in lifestyle modification. Conclusion. This sample provides a sound platform to undertake novel exploratory analyses of the association between a variety of lifestyle factors and MS outcomes.http://dx.doi.org/10.1155/2013/580596 |
| spellingShingle | Emily J. Hadgkiss George A. Jelinek Tracey J. Weiland Naresh G. Pereira Claudia H. Marck Dania M. van der Meer Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics Neurology Research International |
| title | Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics |
| title_full | Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics |
| title_fullStr | Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics |
| title_full_unstemmed | Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics |
| title_short | Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics |
| title_sort | methodology of an international study of people with multiple sclerosis recruited through web 2 0 platforms demographics lifestyle and disease characteristics |
| url | http://dx.doi.org/10.1155/2013/580596 |
| work_keys_str_mv | AT emilyjhadgkiss methodologyofaninternationalstudyofpeoplewithmultiplesclerosisrecruitedthroughweb20platformsdemographicslifestyleanddiseasecharacteristics AT georgeajelinek methodologyofaninternationalstudyofpeoplewithmultiplesclerosisrecruitedthroughweb20platformsdemographicslifestyleanddiseasecharacteristics AT traceyjweiland methodologyofaninternationalstudyofpeoplewithmultiplesclerosisrecruitedthroughweb20platformsdemographicslifestyleanddiseasecharacteristics AT nareshgpereira methodologyofaninternationalstudyofpeoplewithmultiplesclerosisrecruitedthroughweb20platformsdemographicslifestyleanddiseasecharacteristics AT claudiahmarck methodologyofaninternationalstudyofpeoplewithmultiplesclerosisrecruitedthroughweb20platformsdemographicslifestyleanddiseasecharacteristics AT daniamvandermeer methodologyofaninternationalstudyofpeoplewithmultiplesclerosisrecruitedthroughweb20platformsdemographicslifestyleanddiseasecharacteristics |