Evidence-based patient information programme in early multiple sclerosis: A randomised controlled trial

Journal of Neurology, Neurosurgery and Psychiatry

Volumn 85, Issue 4, 2014, Pages 411-418

  Köpke, Sascha ^a,b,c   Kern, Simone ^d   Ziemssen, Tjalf ^d   Berghoff, Martin ^e   Kleiter, Ingo ^f   Marziniak, Martin ^g   Paul, Friedemann ^h,i   Vettorazzi, Eik ^b   Pöttgen, Jana ^b   Fischer, Korbinian ^b   Kasper, Jürgen ^b,c   Heesen, Christoph ^b  

^a UNIVERSITY OF LÜBECK   (Germany)

^b UNIVERSITY MEDICAL CENTER HAMBURG EPPENDORF   (Germany)

^c UNIVERSITY OF HAMBURG   (Germany)

^d UNIVERSITY HOSPITAL CARL GUSTAV CARUS   (Germany)

^e JUSTUS LIEBIG UNIVERSITY GIESSEN   (Germany)

^f ST JOSEF HOSPITAL   (Germany)

^g UNIVERSITY OF MÜNSTER   (Germany)

^h MAX DELBRÜCK CENTER FOR MOLECULAR MEDICINE   (Germany)

ⁱ CHARITÉ UNIVERSITÄTSMEDIZIN BERLIN   (Germany)

Author keywords

[No Author keywords available]

Indexed keywords

IMMUNOMODULATING AGENT;

ADULT; ANXIETY; ARTICLE; ATTITUDE TO HEALTH; CLINICAL EFFECTIVENESS; CONFLICT; CONTROLLED STUDY; DEPRESSION; DISABILITY; DOUBLE BLIND PROCEDURE; EDUCATION PROGRAM; EVIDENCE BASED MEDICINE; FEMALE; HUMAN; IMMUNOTHERAPY; MAJOR CLINICAL STUDY; MALE; MEDICATION COMPLIANCE; MULTICENTER STUDY; MULTIPLE SCLEROSIS; PATIENT AUTONOMY; PATIENT DECISION MAKING; PATIENT EDUCATION; PATIENT INFORMATION; PATIENT PREFERENCE; PATIENT SAFETY; PATIENT SATISFACTION; PRIORITY JOURNAL; QUALITY OF LIFE; RANDOMIZED CONTROLLED TRIAL; RELAPSE; REMISSION; RISK FACTOR; STRESS MANAGEMENT;

MULTIPLE SCLEROSIS;

ADOLESCENT; ADULT; DECISION MAKING; DOUBLE-BLIND METHOD; EVIDENCE-BASED PRACTICE; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MALE; MIDDLE AGED; MULTIPLE SCLEROSIS, RELAPSING-REMITTING; PATIENT EDUCATION AS TOPIC;

EID: 84895808344     PISSN: 00223050     EISSN: 1468330X     Source Type: Journal    
DOI: 10.1136/jnnp-2013-306441     Document Type: Article

References (35)

1. Stys PK, Zamponi GW, van MJ, et al. Will the real multiple sclerosis please stand up? Nat Rev Neurosci 2012;13:507-14.
2. Degenhardt A, Ramagopalan SV, Scalfari A, et al. Clinical prognostic factors in multiple sclerosis: a natural history review. Nat Rev Neurol 2009;5:672-82.
3. Shirani A, Zhao Y, Karim ME, et al. Association between use of interferon beta and progression of disability in patients with relapsing-remitting multiple sclerosis. JAMA 2012;308:247-56.
4. Amato MP, Portaccio E. Truly benign multiple sclerosis is rare: let's stop fooling ourselves-yes. Mult Scler 2012;18:13-14.
5. Skoog B, Runmarker B, Winblad S, et al. A representative cohort of patients with non-progressive multiple sclerosis at the age of normal life expectancy. Brain 2012;135:900-11.
6. Scalfari A, Neuhaus A, Degenhardt A, et al. The natural history of multiple sclerosis: a geographically based study 10: relapses and long-term disability. Brain 2010;133:1914-29.
7. Filippini G, Munari L, Incorvaia B, et al. Interferons in relapsing remitting multiple sclerosis: a systematic review. Lancet 2003;361:545-52. (Pubitemid 36207471)
8. Trojano M, Pellegrini F, Fuiani A, et al. New natural history of interferon-beta-treated relapsing multiple sclerosis. Ann Neurol 2007;61:300-6. (Pubitemid 46676729)
9. Shirani A, Zhao Y, Kingwell E, et al. Temporal trends of disability progression in multiple sclerosis: findings from British Columbia, Canada (1975-2009). Mult Scler 2012;18:442-50.
10. Chalfant AM, Bryant RA, Fulcher G. Posttraumatic stress disorder following diagnosis of multiple sclerosis. J Trauma Stress 2004;17:423-8. (Pubitemid 41185915)
11. Janssens AC, Buljevac D, van Doorn PA v, et al . Prediction of anxiety and distress following diagnosis of multiple sclerosis: a two-year longitudinal study. Mult Scler 2006;12:794-801. (Pubitemid 46111773)
12. Giordano A, Granella F, Lugaresi A, et al. Anxiety and depression in multiple sclerosis patients around diagnosis. J Neurol Sci 2011;307:86-91.
13. General Medical Council (GMC). Consent: patients and doctors making decisions together 2008. http://www.gmc-uk.org/static/documents/content/Consent- --English-0911.pdf (accessed 12/07/2013).
14. Bruce JM, Hancock LM, Arnett P, et al. Treatment adherence in multiple sclerosis: association with emotional status, personality, and cognition. J Behav Med 2010;33:219-27.
15. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ 2007;335:24-7. (Pubitemid 47066902)
16. Heesen C, Kasper J, Segal J, et al. Decisional role preferences, risk knowledge and information interests in patients with multiple sclerosis. Mult Scler 2004;10:643 -50.
17. Kasper J, Köpke S, Mühlhauser I, et al. Evidence-based patient information about treatment of multiple sclerosis-a phase one study on comprehension and emotional responses. Patient Educ Couns 2006;62:56-63. (Pubitemid 43832059)
18. Heesen C, Schäffler N, Kasper J, et al. Suspected multiple sclerosis-what to do? Evaluation of a patient information leaflet. Mult Scler 2009;15:1103 -12.
19. Solari A, Mattarozzi K, Vignatelli L, et al. Development and validation of a patient self-assessed questionnaire on satisfaction with communication of the multiple sclerosis diagnosis. Mult Scler 2010;16:1237-47.
20. Köpke S, Kasper J, Mühlhauser I, et al. Patient education program to enhance decision autonomy in multiple sclerosis relapse management: a randomized-controlled trial. Mult Scler 2009;15:96-104.
21. Köpke S, Solari A, Khan F, et al . Information provision for persons with multiple sclerosis (Cochrane Review). Mult Scler 2012;18:475.
22. Craig P, Dieppe P, Macintyre S, et al. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ 2008;337:a1655.
23. Bunge M, Mühlhauser I, Steckelberg A. What constitutes evidence-based patient information? Overview of discussed criteria. Patient Educ Couns 2010;78:316-28.
24. Ajzen I. From intentions to actions: a theory of planned behaviour. In: Kuhl J, Beckmann J. eds Action control: from cognition to behaviour. New York: Springer, 1985:11-39.
25. Kasper J, Köpke S, Fischer K, et al. Applying the theory of planned behaviour to multiple sclerosis patients' decisions on disease modifying therapy-questionnaire concept and validation. BMC Med Inform Decis Mak 2012;12:60.
26. Kern S. First results. Mult Scler 2008;14:S29.
27. Marteau TM, Dormandy E, Michie S. A measure of informed choice. Health Expect 2001;4:99-108. (Pubitemid 32464021)
28. Degner LF, Sloan JA, Venkatesh P. The control preferences scale. Can J Nurs Res 1997;29:21-43. (Pubitemid 127473357)
29. Kasper J, Köpke S, Mühlhauser I, et al. Informed shared decision making about immunotherapy for patients with multiple sclerosis (ISDIMS): a randomized controlled trial. Eur J Neurol 2008;15:1345-52.
30. Buchholz A, Hölzel L, Kriston L, et al. [German-language version of Decisional Conflict Scale (DCS-D). Dimensional structure in a sample of family physician patients]. Klinische Diagnostik und Evaluation 2011;4:15-30.
31. Herrmann-Lingen C, Buss U, Snaith RP. Hospital anxiety and depression scale-German Version (HADS-D). 3rd edn. Bern: Hans-Huber, 2011.
32. Heesen C, Reich C, Borchers C, et al. [Patient based scoring instruments in multiple sclerosis-German validation of the United Kingdom Disability Scale (UNDS) and the Patient-Generated-Index (PGI)]. Neurol Rehabil 2007;13:17-29.
33. Saba GW, Wong ST, Schillinger D, et al. Shared decision making and the experience of partnership in primary care. Ann Fam Med 2006;4:54-62. (Pubitemid 43243913)
34. Kasper J, Heesen C, Köpke S, et al. Patients' and observers' perceptions of involvement differ. Validation study on inter-relating measures for shared decision making. PLoS ONE 2011;6:e26255.
35. Mulley A, Trimble C, Elwyn G. Patients' preferences matter: stop the silent misdiagnosis. The King's Fund, 2012. http://www.kingsfund.org.uk/ publications/patients-preferences.html