The Physical and Psychological Impact of Multiple Sclerosis Using the MSIS-29 via the Web Portal of the UK MS Register

PLoS ONE

Volumn 8, Issue 1, 2013, Pages

  Jones, Kerina H ^a   Ford, David V ^a   Jones, Philip A ^a   John, Ann ^a   Middleton, Rodden M ^a   Lockhart Jones, Hazel ^a   Peng, Jeffrey ^a   Osborne, Lisa A ^a   Noble, J Gareth ^a  

^a SWANSEA UNIVERSITY   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGE DISTRIBUTION; AGED; ARTICLE; COHORT ANALYSIS; COMPUTER PROGRAM; DAILY LIFE ACTIVITY; DATA ANALYSIS; DEMOGRAPHY; DISABILITY; DISEASE DURATION; EMPLOYMENT STATUS; FACTUAL DATABASE; FEMALE; HEALTH IMPACT ASSESSMENT; HOSPITAL ANXIETY AND DEPRESSION SCALE; HUMAN; INTERNAL CONSISTENCY; INTERNET; JOB PERFORMANCE; MAJOR CLINICAL STUDY; MALE; MENTAL HEALTH; MULTIPLE SCLEROSIS; PHYSICAL CAPACITY; PSYCHOLOGICAL ASPECT; RATING SCALE; REGISTER; THE MULTIPLE SCLEROSIS IMPACT SCALE 29; UNITED KINGDOM;

AGE FACTORS; COHORT STUDIES; DATA COLLECTION; GREAT BRITAIN; HEALTH STATUS INDICATORS; HUMANS; INTERNET; MULTIPLE SCLEROSIS; STATISTICS, NONPARAMETRIC;

EID: 84873129774     PISSN: None     EISSN: 19326203     Source Type: Journal    
DOI: 10.1371/journal.pone.0055422     Document Type: Article

References (28)

1. Zigmond AS, Snaith RP, (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67 (6):: 361-370.
2. Hobart J, Lamping D, Fitzpatrick R, Riazi A, Thompson A, (2001) The Multiple Sclerosis Impact Scale (MSIS-29). Brain 124 (5):: 962.
3. Hobart J, Cano S, (2009) Improving the evaluation of therapeutic interventions in multiple sclerosis: the role of new psychometric methods. Health Technology Assessment 13 (12).
4. Ramp M, Khan F, Misajon RA, Pallant JF, (2009) Rasch analysis of the Multiple Sclerosis Impact Scale (MSIS-29). Health and Quality of Life Outcomes 7: 58.
5. Gray OM, McDonnell GV, Hawkins SA, (2009) Tried and tested: the psychometric properties of the Multiple Sclerosis Impact Scale (MSIS-29) in a population-based study. Multiple Sclerosis Journal 15: 75-80.
6. Hoogervorst EL, Zwemmer JN, Jelles B, Polman CH, Uitehaag BM, (2004) Multiple Sclerosis Impact Scale (MSIS-29): relation to established measures of impairment and disability. Multiple Sclerosis Journal 10 (5):: 569-574.
7. van der Linden FAH, Kragt JJ, Klein M, van der Ploeg HM, Polman CH, et al. (2005) Psychometric evaluation of the Multiple Sclerosis Impact Scale (MSIS-29) for proxy use. J Neurol Neurosurg Psychiatry 76: 1677-1681.
8. Hobart J, Lamping D, Fitzpatrick R, Riazi A, Thompson A, (2005) How responsive is the Multiple Sclerosis Impact Scale (MSIS-29)? A comparison with some other self-report scales. J Neurol Neurosurg Psychiatry 76: 1539-1543.
9. McGuigan C, Hutchinson M, (2004) The multiple sclerosis impact scale (MSIS-29) is a reliable and sensitive measure. J Neurol Neurosurg Psychiatry 75 (2):: 266-269.
10. Riazi A, Hobart J, Lamping D, Fitzpatrick R, Thompson A, (2002) Multiple Sclerosis Impact Scale (MSIS-29): reliability and validity in hospital based samples. J Neurol Neurosurg Psychiatry 73 (6):: 701-704.
11. Ford DV, Jones KH, Middleton RM, Lockhart-Jones H, Maramba IDC, et al. (2012) The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC Medical Informatics and Decision Making 12 (1):: 73.
12. Noble JG, Osborne LA, Jones KH, Middleton RM, Ford DV, (2012) Commentary on 'Disability outcome measures in multiple sclerosis clinical trials'. Multiple Sclerosis Journal Published online before print, 11 September 2012, doi:10.1177/1352458512457847.
13. Ford DV, Jones KH, Verplancke JP, Lyons RA, John G, et al. (2009) The SAIL Databank: building a national architecture for e-health research and evaluation. BMC Health Services Research 9 (1):: 157.
14. Lyons RA, Jones KH, John G, Brooks CJ, Verplancke JP, et al. (2009) The SAIL databank: linking multiple health and social care datasets. BMC Medical Informatics and Decision Making 9 (1):: 3.
15. The EuroQol group (1990) EuroQol- a new facility for the measurement of health related quality of life. Health Policy 16: 199-208.
16. Jones KH, Ford DV, Jones PA, John A, Middleton RM, et al. (2012) A Large-scale Study of Anxiety and Depression in People with Multiple Sclerosis: a Survey via the Web Portal of the UK MS Register. PLoS One 7 (7):: e41910 doi:10.1371/journal.pone.0041910.
17. National Research Ethics Service website. Ethical review of research databases. Available: http://www.nres.nhs.uk/applications/approval-requirements/ethical-review-requirements/research-databases/. Accessed 2012 Sep 13.
18. The UK MS Register website. Available: http://www.ukmsregister.org. Accessed 2012 Sep 13.
19. Office for National Statistics. Nomis: official labour market statistics 2010-2011. Available: http://www.nomisweb.co.uk/reports/lmp/gor/2013265930/report.aspx?pc=sa20pr#tabempocc. Accessed 2012 Sep 13.
20. Multiple Sclerosis International Federation website. Atlas of MS Data: Profile Country: United Kingdom. Available: http://www.atlasofms.org/query.aspx. Accessed 2012 Sep 13.
21. Whitacre CC, Reingold SC, O'Looney PA, Blankenhorn E, Brinley F, et al. (1999) A Gender Gap in Autoimmunity. Science 283 (5406):: 1277-1278.
22. Zajicek JP, Ingram WM, Vickery J, Creanor S, Wright DE, et al. (2010) Patient-oriented longitudinal study of multiple sclerosis in south west England (The South West Impact of Multiple Sclerosis Project, SWIMS) 1: protocol and baseline characteristics of cohort. BMC Neurology 10: 88.
23. Multiple Sclerosis Society of Great Britain and Northern Ireland website. Available: http://www.mssociety.org.uk/. Accessed 2012 Sep 13.
24. Good A, Stokes S, Jerrams-Smith J, (2007) Elderly, Novice Users and Health Information Websites: issues of accessibility and usability. Journal of Healthcare Information Management 21 3: 72-79.
25. Boot CLR, Frans JM, (2010) The public and the Internet: Multifaceted drives for seeking health information. Health Informatics Journal 16: 145.
26. European Medicines Agency (2012) Guideline on clinical investigation of medicinal products for the treatment of Multiple Sclerosis, EMA/CHMP/771815/2011, Rev 2 September 2012. Available: http://www.ema.europa.eu/docs/en_GB/document_library/Scientific_guideline/2012/10/WC500133438.pdf. Accessed 2012 Jan 8.
27. Osborne LA, Noble JG, Lockhart-Jones H, Middleton RM, Thompson S, et al. (2012) Sources of discovery, reasons for registration, and expectations of an internet-based register for Multiple Sclerosis: Visualisations and explorations of word uses and contexts. International Journal of Healthcare Information Systems and Informatics 7: 3.
28. Osborne LA, Noble JG, Lockhart-Jones H, Middleton RM, Thompson S, et al. Barriers to the use of an internet-based register for Multiple Sclerosis as identified by internet-using people with MS based on their experiences. International Journal of Healthcare Information Systems and Informatics In press.