Journal of Neural Transmission

, Volume 120, Supplement 1, pp 61–66 | Cite as

Multiple sclerosis documentation system (MSDS): moving from documentation to management of MS patients

  • Tjalf Ziemssen
  • Raimar Kempcke
  • Marco Eulitz
  • Lars Großmann
  • Alexander Suhrbier
  • Katja Thomas
  • Thorsten Schultheiss
Neurology and Preclinical Neurological Studies - Review Article

Abstract

The long disease duration of multiple sclerosis and the increasing therapeutic options require a individualized therapeutic approach which should be carefully documented over years of observation. To switch from MS documentation to an innovative MS management, new computer- and internet-based tools could be implemented as we could demonstrate with the novel computer-based patient management system “multiple sclerosis management system 3D” (MSDS 3D). MSDS 3D allows documentation and management of visit schedules and mandatory examinations via defined study modules by integration of data input from various sources (patients, attending physicians and MS nurses). It provides forms for the documentation of patient visits as well as clinical and diagnostic findings. Information can be collected via interactive touch screens. Specific modules allow the management of highly efficacious treatments as natalizumab or fingolimod. MSDS can be used to transfer the documented data to databases as, e.g. the registry of the German MS society or REGIMS. MSDS has already been implemented successfully in clinical practice and is currently being evaluated in a multicenter setting. High-quality management and documentation are crucial for improvements in clinical practice and research work.

Keywords

Multiple sclerosis Multiple sclerosis documentation system Management Database 

References

  1. Berger JR, Centonze D, Comi G, Confavreux C, Cutter G, Giovannoni G, Gold R, Hartung HP, Lublin F, Miravalle A, Montalban X, O’Connor P, Olsson T, Polman CH, Stuve O, Wolinsky JS, Ziemssen T (2010) Considerations on discontinuing natalizumab for the treatment of multiple sclerosis. Ann Neurol 68(3):409–411PubMedCrossRefGoogle Scholar
  2. Compston A, Coles A (2002) Multiple sclerosis. Lancet 359(9313):1221–1231PubMedCrossRefGoogle Scholar
  3. Confavreux C, Paty DW (1995) Current status of computerization of multiple sclerosis clinical data for research in Europe and North America: the EDMUS/MS-COSTAR connection. European database for multiple sclerosis. Multiple sclerosis-computed stored ambulatory record. Neurology 45(3 Pt 1):573–576PubMedCrossRefGoogle Scholar
  4. Evans C, Tam J, Kingwell E, Oger J, Tremlett H (2012) Long-term persistence with the immunomodulatory drugs for multiple sclerosis: a retrospective database study. Clin Ther 34(2):341–350PubMedCrossRefGoogle Scholar
  5. Flachenecker P, Zettl UK, Gotze U, Haas J, Schimrigk S, Elias W, Pette M, Eulitz M, Hennig M, Bertram J, Hollweck R, Neiss A, Daumer M, Pitschnau-Michel D, Rieckmann P (2005) MS registry in Germany—design and first results of the pilot phase. Der Nervenarzt 76(8):967–975PubMedCrossRefGoogle Scholar
  6. Fugger L, Friese MA, Bell JI (2009) From genes to function: the next challenge to understanding multiple sclerosis. Nat Rev Immunol 9(6):408–417PubMedCrossRefGoogle Scholar
  7. Gasperini C, Ruggieri S, Mancinelli CR, Pozzilli C (2013) Advances in the treatment of relapsing-remitting multiple sclerosis—critical appraisal of fingolimod. Ther Clin Risk Manag 9:73–85PubMedGoogle Scholar
  8. Giovannoni G, Kinkel P, Vartanian T (2007) Treating multiple sclerosis in the natalizumab era: risks, benefits, clinical decision making, and a comparison between North American and European Union practices. Rev Neurol Dis 4(4):184–193PubMedGoogle Scholar
  9. Haase R, Schultheiss T, Kempcke R, Thomas K, Ziemssen T (2012) Use and acceptance of electronic communication by patients with multiple sclerosis: a multicenter questionnaire study. J Med Internet Res 14(5):e135PubMedCrossRefGoogle Scholar
  10. Haase R, Schultheiss T, Kempcke R, Thomas K, Ziemssen T (2013) Modern communication technology skills of patients with multiple sclerosis. Mult Scler [Epub ahead of print]Google Scholar
  11. Kempcke R, Schultheiss T, Kratzsch F, Eulitz M, Reichmann H, Ziemssen T (2012a) Modern therapy management for the improvement of the therapy with interferon beta-1b with MSDS 3D. Aktuelle Neurol 39:S2–S5CrossRefGoogle Scholar
  12. Kempcke R, Schultheiss T, Ziemssen T (2012b) Advances in MS patient management: update of Multiple Sclerosis Documentation System ‘MSDS 3D’. Eur J Neurol 19:710Google Scholar
  13. Kratzsch F, Eulitz M, Kempcke R, Lorz A, Meissner K, Ziemssen T (2009) Development of the multidimensional (physician, nurse, patient) multiple sclerosis documentation system “MSDS 3D”. Mult Scler 15(9):S55–S55Google Scholar
  14. Lugaresi A, Ziemssen T, Oreja-Guevara C, Thomas D, Verdun E (2012) Improving patient-physician dialog: commentary on the results of the MS Choices survey. Patient Prefer Adherence 6:143–152PubMedCrossRefGoogle Scholar
  15. MacLean R (2004) The challenge of managing patients with multiple sclerosis. Nurs Times 100(4):42–44PubMedGoogle Scholar
  16. Pette M, Eulitz M (2002) The Multiple sclerosis documentation system MSDS. Discussion of a documentation standard for multiple sclerosis. Der Nervenarzt 73(2):144–148PubMedCrossRefGoogle Scholar
  17. Pette M, Zettl UK (2002) The use of multiple sclerosis databases at neurological university hospitals in Germany. Mult Scler 8(3):265–267PubMedCrossRefGoogle Scholar
  18. Schultheiss T, Kempcke R, Kratzsch F, Eulitz M, Pette M, Reichmann H, Ziemssen T (2012a) Multiple sclerosis management system 3D. Moving from documentation towards management of patients. Der Nervenarzt 83(4):450–457PubMedCrossRefGoogle Scholar
  19. Schultheiss T, Kempcke R, Ziemssen T (2012b) Innovative management of MS patients on natalizumab using MSDS 3D software. J Neurol 259:S109Google Scholar
  20. Sobek S, Kempcke R, Ziemssen T, Schultheiss T (2012) Impact of fampridine on fatigue, depression and cognition in multiple sclerosis. Eur J Neurol 19:354Google Scholar
  21. Trapp BD, Peterson J, Ransohoff RM, Rudick R, Mork S, Bo L (1998) Axonal transection in the lesions of multiple sclerosis. N Engl J Med 338(5):278–285PubMedCrossRefGoogle Scholar
  22. Whitaker JN, Mitchell GW, Cutter GR (1995) Clinical outcomes and documentation of partial beneficial effects of immunotherapy for multiple sclerosis. Ann Neurol 37(1):5–6PubMedCrossRefGoogle Scholar
  23. Ziemssen T (2009) Multiple sclerosis beyond EDSS: depression and fatigue. J Neurol Sci 277(Suppl 1):S37–S41PubMedCrossRefGoogle Scholar
  24. Ziemssen T (2011) Symptom management in patients with multiple sclerosis. J Neurol Sci 311(S1):S48–S52CrossRefGoogle Scholar
  25. Ziemssen T, Kratzsch F, Eulitz M, Kempcke R, Kleiner N (2010a) Development and first evaluation of the new patient management and documentation system MSDS 3D for patients with multiple sclerosis. Neurology 74(9):A554Google Scholar
  26. Ziemssen T, Kratzsch F, Kempcke R (2010b) Patient management of MS patients on natalizumab therapy with MSDS 3D. Nervenheilkunde 29:S31–S33Google Scholar
  27. Ziemssen T, van Lokven T, Kempcke R, Meergans M (2012a) Study design and first results of a non-interventional registry study to establish long-term safety and pharmaco-economic data on fingolimod (Gilenya (R)) in multiple sclerosis patients in Germany (PANGAEA). J Neurol 259:S72Google Scholar
  28. Ziemssen T, van Lokven T, Kempke R, Meergans M (2012b) Study design and first results of a non-interventional registry study to establish long-term safety and pharmaco-economic data on fingolimod (Gilenya (R)) in multiple sclerosis patients in Germany (PANGAEA). Neurology 78:A332Google Scholar
  29. Ziemssen T, van Lokven T, Ortler S, Meergans M (2012c) Changes in current evaluation of new drugs needs survey of pharma-economic data: treatment satisfaction of fingolimod (Gilenya) in comparison to first-line-therapeutics in multiple sclerosis patients (PANGAEA and PEARL). Aktuelle Neurol 39(7):385CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Wien 2013

Authors and Affiliations

  • Tjalf Ziemssen
    • 1
    • 2
  • Raimar Kempcke
    • 1
  • Marco Eulitz
    • 2
  • Lars Großmann
    • 1
  • Alexander Suhrbier
    • 1
  • Katja Thomas
    • 1
    • 2
  • Thorsten Schultheiss
    • 1
    • 2
  1. 1.MS Center Dresden, Center of Clinical NeuroscienceUniversity Hospital Carl Gustav Carus, Dresden University of TechnologyDresdenGermany
  2. 2.Department of NeurologyUniversity Hospital Carl Gustav Carus, Dresden University of TechnologyDresdenGermany

Personalised recommendations