An information aid for newly diagnosed multiple sclerosis patients improves disease knowledge and satisfaction with care

Abstract

Background: Patients report information deficits in the period surrounding diagnosis of multiple sclerosis (MS). We assessed the effectiveness of an add-on information aid for newly diagnosed MS patients.

Methods: We randomly assigned 120 newly diagnosed MS patients from five Italian centres to diagnosis disclosure (current practice at the centre) or current practice plus information aid (ISRCTN81072971). The information aid consisted of a personal interview with a physician using a navigable compact disc and a take-home booklet. The primary composite endpoint was score in the highest tertile of MS knowledge and satisfaction with care questionnaires. Other endpoints were safety; treatment adherence; extra contacts/consultations; switching of care centre; and changes in Hospital Anxiety and Depression Scale and Control Preference Scale scores.

Results: At 1 month, 30/60 intervention and 8/60 control patients achieved the primary endpoint (odds ratio [OR] 6.5, 95% CI 2.6—16.0; p < 0.001; number needed to treat [NNT] 3). Figures at 6 months were 26/60 intervention and 11/60 control patients (OR 3.4, 95% CI 1.5—7.8; p = 0.04; NNT 4). There were no adverse events. No significant treatment effects were seen on secondary outcomes.

Conclusion: The information aid was safe and significantly associated with attainment of the primary outcome at 1 and 6 months.

Keywords

complex health intervention health knowledge information aid multiple sclerosis patient satisfaction randomized controlled trial

Get full access to this article

View all access options for this article.

References

National Collaborating Centre for Chronic Conditions. Multiple sclerosis: national clinical guideline for diagnosis and management in primary and secondary care. ( NICE Clinical Guideline 8). London, GB: Royal College of Physicians, 2004.

Kopke S. , Kasper J. , Mühlhauser I. , Nübling M. and Heesen C. Patient education program to enhance decision autonomy in multiple sclerosis relapse management: a randomized-controlled trial. Mult Scler 2009; 15: 96-104.

Kasper J. , Köpke S. , Mühlhauser I. , Nübling M. and Heesen C. Informed shared decision making about immunotherapy for patients with multiple sclerosis (ISDIMS): a randomized controlled trial. Eur J Neurol 2008; 15: 1345-1352.

Prunty MC , Sharpe L. , Butow P. and Fulcher G. The motherhood choice: A decision aid for women with multiple sclerosis. Patient Educ Couns 2008; 71: 108-115.

Polman CH , Reingold SC , Edan G. , Filippi M. , Hartung HP , Kappos L. , et al. Diagnostic criteria for multiple sclerosis: 2005 revisions to the ‘McDonald’ criteria. Ann Neurol 2005; 58: 840-846.

Zigmond AS and Snaith RP The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 1983; 67: 361-370.

Costantini M. , Musso P. , Viterbori F. , Bonci L. , Del Mastro O, Garrone , et al. Detecting psychological distress in cancer patients: validity of the Italian version of the Hospital Anxiety and Depression Scale. Support Care Cancer 1999; 7: 121-127.

Degner LF , Sloan JA and Venkatesh P. The control preference scale. Can J Nurs Res 1997; 29: 21-43.

Giordano A. , Mattarozzi K. , Pucci E. , Leone M. , Casini F. , Colimedaglia L. , et al. Participation in medical decision-making: Attitudes of Italians with multiple sclerosis. J Neurol Sci 2008 ; 275: 86-91.

10.

Kurtzke JF Rating neurologic impairment in multiple sclerosis: an expanded disability status scale. Neurology 1983; 33: 1444-1452.

11.

Solari A. , Acquarone N. , Pucci E. , Martinelli V. , Marrosu MG , Trojano M. , et al. Communicating the diagnosis of multiple sclerosis - a qualitative study. Mult Scler 2007; 13: 763-769.

12.

Elwyn G. , O’Connor A. , Stacey D. , Volk R. , Edwards A. , Coulter A. , et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. Br Med J 2006; 333: 417.

13.

Giordano A. , Messmer Uccelli M. , Pucci E. , Martinelli V. , Borreani C. , Lugaresi A. , et al. The Multiple Sclerosis Knowledge Questionnaire: a self-administered instrument for recently diagnosed patients. Mult Scler 2010; 16: 100-111.

14.

Solari A. , Mattarozzi K. , Vignatelli L. , Giordano A. , Russo PM , Messmer Uccelli M. , et al. on behalf of the SIMS-Trial group and of the GERONIMUS group. Development and validation of a patient self-assessed questionnaire on satisfaction with communication of the multiple sclerosis diagnosis. Mult Scler 2010; 16: 1237-1247.

15.

Lewin S. , Glenton C. and Oxman AD Use of qualitative methods alongside randomised controlled trials of complex healthcare interventions: methodological study. Br Med J 2009; 339: b3496.

16.

Tariman JD , Berry DL , Cochrane B. , Doorenbos A. and Schepp K. Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Ann Oncol 2010; 21: 1145-1151.

17.

Thorpe KE , Zwarenstein M. , Oxman AD , Treweek S. , Furberg CD , Altman DG , et al. A pragmatic-explanatory continuum indicator summary (PRECIS): a tool to help trial designers. J Clin Epidemiol 2009; 62: 464-475.

18.

McCaffery KJ , Smith SK and Wolf M. The challenge of shared decision making among patients with lower literacy: a framework for research and development. Med Decis Making 2010; 30: 35-44.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.01 MB