Use and acceptance of electronic communication by patients with multiple sclerosis: a multicenter questionnaire study

Rocco Haase, Thorsten Schultheiss, Raimar Kempcke, Katja Thomas, Tjalf Ziemssen, Rocco Haase, Thorsten Schultheiss, Raimar Kempcke, Katja Thomas, Tjalf Ziemssen

Abstract

Background: The number of multiple sclerosis (MS) information websites, online communities, and Web-based health education programs has been increasing. However, MS patients' willingness to use new ways of communication, such as websites, mobile phone application, short message service, or email with their physician, remains unknown.

Objectives: We designed a questionnaire to evaluate the a priori use of electronic communication methods by MS patients and to assess their acceptance of such tools for communication with their health care providers.

Methods: We received complete data from 586 MS patients aged between 17 and 73 years. Respondents were surveyed in outpatient clinics across Germany using a novel paper-and-pencil questionnaire. In addition to demographics, the survey items queried frequency of use of, familiarity with, and comfort with using computers, websites, email, and mobile phones.

Results: About 90% of all MS patients used a personal computer (534/586) and the Internet (527/586) at least once a week, 87.0% (510/586) communicated by email, and 85.6% (488/570) communicated by mobile phone. When asked about their comfort with using electronic communication methods for communication with health care providers, 20.5% (120/586) accepted communication by mobile Internet application or short message service via mobile phone, 41.0% (240/586) by websites, 54.3% (318/586) by email service, and 67.8% (397/586) by at least one type of electronic communication. The level of a priori use was the best predictor for the acceptance of electronic communication with health care providers. Patients who reported already searching online for health information (odds ratio 2.4, P < .001) and who had already communicated with a physician through a website (odds ratio 3.3, P = .03) reported higher acceptance for Web-based communication. Patients who already scheduled appointments with their mobile phones (odds ratio 2.1, P = .002) were more likely to accept the use of mobile phone applications or short message service for communicating with their physician.

Conclusions: The majority of MS patients seen at specialist centers already use modern communication technology regularly. New forms of electronic communication appear to have high levels of acceptance for exchanging information about MS between patients and health care providers. Such methods should be integrated into eHealth services such as electronic health records and patient relationship management systems.

Conflict of interest statement

None declared.

References

    1. Eysenbach G, Kohler Ch. What is the prevalence of health-related searches on the World Wide Web? Qualitative and quantitative analysis of search engine queries on the internet. AMIA Annu Symp Proc. 2003:225–9.D030003690
    1. Baker L, Wagner TH, Singer S, Bundorf MK. Use of the Internet and e-mail for health care information: results from a national survey. JAMA. 2003 May 14;289(18):2400–6. doi: 10.1001/jama.289.18.2400.289/18/2400
    1. Ybarra ML, Suman M. Help seeking behavior and the Internet: a national survey. Int J Med Inform. 2006 Jan;75(1):29–41. doi: 10.1016/j.ijmedinf.2005.07.029.S1386-5056(05)00147-4
    1. Fox S, Jones S. The social life of health information. Washington, DC: Pew Internet & American Life Project; 2009. Jun, [2012-04-11]. .
    1. Gesundheitsberichterstattung des Bundes. Berlin: Robert Koch-Institut; 2003. [2012-04-11]. Nutzung von Informationsquellen über Gesundheit .
    1. Kummervold PE, Chronaki CE, Lausen B, Prokosch HU, Rasmussen J, Santana S, Staniszewski A, Wangberg SC. eHealth trends in Europe 2005-2007: a population-based survey. J Med Internet Res. 2008;10(4):e42. doi: 10.2196/jmir.1023. v10i4e42
    1. Andreassen HK, Bujnowska-Fedak MM, Chronaki CE, Dumitru RC, Pudule I, Santana S, Voss H, Wynn R. European citizens' use of E-health services: a study of seven countries. BMC Public Health. 2007;7:53. doi: 10.1186/1471-2458-7-53. 1471-2458-7-53
    1. Santana S, Lausen B, Bujnowska-Fedak M, Chronaki CE, Prokosch HU, Wynn R. Informed citizen and empowered citizen in health: results from an European survey. BMC Fam Pract. 2011;12:20. doi: 10.1186/1471-2296-12-20. 1471-2296-12-20
    1. Santana S, Lausen B, Bujnowska-Fedak M, Chronaki C, Kummervold PE, Rasmussen J, Sorensen T. Online communication between doctors and patients in Europe: status and perspectives. J Med Internet Res. 2010;12(2):e20. doi: 10.2196/jmir.1281. v12i2e20
    1. Kobelt G, Berg J, Lindgren P, Elias WG, Flachenecker P, Freidel M, König N, Limmroth V, Straube E. Costs and quality of life of multiple sclerosis in Germany. Eur J Health Econ. 2006 Sep;7 Suppl 2:S34–44. doi: 10.1007/s10198-006-0384-8.
    1. Hay MC, Strathmann C, Lieber E, Wick K, Giesser B. Why patients go online: multiple sclerosis, the internet, and physician-patient communication. Neurologist. 2008 Nov;14(6):374–81. doi: 10.1097/NRL.0b013e31817709bb.00127893-200811000-00005
    1. Nielsen AS, Halamka JD, Kinkel RP. Internet portal use in an academic multiple sclerosis center. J Am Med Inform Assoc. 2012;19(1):128–33. doi: 10.1136/amiajnl-2011-000177.amiajnl-2011-000177
    1. Ziemssen T. Symptom management in patients with multiple sclerosis. J Neurol Sci. 2011;311(suppl 1):S48–52. doi: 10.1016/S0022-510X(11)70009-0.
    1. Harland J, Bath P. Assessing the quality of websites providing information on multiple sclerosis: evaluating tools and comparing sites. Health Informatics J. 2007 Sep;13(3):207–21. doi: 10.1177/1460458207079837.13/3/207
    1. Hoffmann T, Twork S, Pöhlau D, Kugler J. Patientenorientierung im Internet: qualitative Bewertung von Internetseiten für Multiple-Sklerose-Betroffene. Akt Neurol. 2009;36(04):151–157. doi: 10.1055/s-0028-1090238.
    1. Hassol A, Walker JM, Kidder D, Rokita K, Young D, Pierdon S, Deitz D, Kuck S, Ortiz E. Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging. J Am Med Inform Assoc. 2004;11(6):505–13. doi: 10.1197/jamia.M1593. M1593
    1. Lowe-Strong A, McCullagh PJ. Monitoring of symptoms and interventions associated with multiple sclerosis. Stud Health Technol Inform. 2005;117:223–8.
    1. Michel-Verkerke MB, Schuring RW, Spil TAM. Workflow management for multiple sclerosis patients: IT and organization. Proceedings of the 37th Annual Hawaii International Conference on Systems Sciences; 37th Annual Hawaii International Conference on Systems Sciences; Jan 5-8, 2004; Big Island, Hawaii. IEEE; 2004.
    1. Schultheiss T, Kempcke R, Kratzsch F, Eulitz M, Pette M, Reichmann H, Ziemssen T. [Multiple sclerosis management system 3D. Moving from documentation towards management of patients] Nervenarzt. 2012 Apr;83(4):450–7. doi: 10.1007/s00115-011-3376-6.
    1. Hatzakis MJ, Allen C, Haselkorn M, Anderson SM, Nichol P, Lai C, Haselkorn JK. Use of medical informatics for management of multiple sclerosis using a chronic-care model. J Rehabil Res Dev. 2006;43(1):1–16.
    1. Fernandez-Luque L, Elahi N, Grajales FJ. An analysis of personal medical information disclosed in YouTube videos created by patients with multiple sclerosis. Stud Health Technol Inform. 2009;150:292–6.
    1. Wicks P, Massagli M, Kulkarni A, Dastani H. Use of an online community to develop patient-reported outcome instruments: the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ) J Med Internet Res. 2011;13(1):e12. doi: 10.2196/jmir.1687. v13i1e12
    1. Goverover Y, O'Brien AR, Moore NB, DeLuca J. Actual reality: a new approach to functional assessment in persons with multiple sclerosis. Arch Phys Med Rehabil. 2010 Feb;91(2):252–60. doi: 10.1016/j.apmr.2009.09.022.S0003-9993(09)00874-0
    1. Negreiros MA, Mattos P, Landeira-Fernandez J, Paes RA, Alvarenga RP. A brief neuropsychological screening test battery for cognitive dysfunction in Brazilian multiple sclerosis patients. Brain Inj. 2008 May;22(5):419–26. doi: 10.1080/02699050801998243.791846949
    1. Younes M, Hill J, Quinless J, Kilduff M, Peng B, Cook SD, Cadavid D. Internet-based cognitive testing in multiple sclerosis. Mult Scler. 2007 Sep;13(8):1011–9. doi: 10.1177/1352458507077626.1352458507077626
    1. Atreja A, Mehta N, Miller D, Moore S, Nichols K, Miller H, Harris CM. One size does not fit all: using qualitative methods to inform the development of an Internet portal for multiple sclerosis patients. AMIA Annu Symp Proc. 2005:16–20.58909
    1. Matti AI, McCarl H, Klaer P, Keane MC, Chen CS. Multiple sclerosis: patients' information sources and needs on disease symptoms and management. Patient Prefer Adherence. 2010;4:157–61.
    1. Ball MJ, Lillis J. E-health: transforming the physician/patient relationship. Int J Med Inform. 2001 Apr;61(1):1–10.S1386-5056(00)00130-1
    1. Wald HS, Dube CE, Anthony DC. Untangling the Web--the impact of Internet use on health care and the physician-patient relationship. Patient Educ Couns. 2007 Nov;68(3):218–24. doi: 10.1016/j.pec.2007.05.016.S0738-3991(07)00221-2
    1. Lode K, Larsen JP, Bru E, Klevan G, Myhr KM, Nyland H. Patient information and coping styles in multiple sclerosis. Mult Scler. 2007 Jul;13(6):792–9. doi: 10.1177/1352458506073482.1352458506073482
    1. Lejbkowicz I, Paperna T, Stein N, Dishon S, Miller A. Internet usage by patients with multiple sclerosis: implications to participatory medicine and personalized healthcare. Mult Scler Int. 2010;2010:640749. doi: 10.1155/2010/640749.
    1. Pucci E. Is the internet transforming the physician-consumer relationship? Preliminary data in a neurological setting. Eur J Neurol. 2003 Mar;10(2):192.564_5
    1. Gerber BS, Eiser AR. The patient physician relationship in the Internet age: future prospects and the research agenda. J Med Internet Res. 2001;3(2):E15. doi: 10.2196/jmir.3.2.e15.
    1. Polman CH, Reingold SC, Edan G, Filippi M, Hartung HP, Kappos L, Lublin FD, Metz LM, McFarland HF, O'Connor PW, Sandberg-Wollheim M, Thompson AJ, Weinshenker BG, Wolinsky JS. Diagnostic criteria for multiple sclerosis: 2005 revisions to the "McDonald Criteria". Ann Neurol. 2005 Dec;58(6):840–6. doi: 10.1002/ana.20703.
    1. Statistisches Landesamt Baden-Wuerttemberg, Germany Statistische Berichte Baden-Wuerttemberg. 2011. Jul 20, [2012-07-05]. Bevoelkerungsentwicklung in den Gemeinden Baden-Wuerttembergs 2010 .
    1. Statistisches Landesamt des Freistaates Sachsen, Germany . 2012. Jan, [2012-07-05]. Bevoelkerung des Freistaates Sachsen jeweils am Monatsende ausgewaehlter Berichtsmonate nach Gemeinden .
    1. Minden SL, Frankel D, Hadden L, Hoaglin DC. Access to health care for people with multiple sclerosis. Mult Scler. 2007 May;13(4):547–58. doi: 10.1177/1352458506071306.1352458506071306
    1. Green BB, Anderson ML, Ralston JD, Catz S, Fishman PA, Cook AJ. Patient ability and willingness to participate in a web-based intervention to improve hypertension control. J Med Internet Res. 2011;13(1):e1. doi: 10.2196/jmir.1625. v13i1e1
    1. Wagner TH, Baker LC, Bundorf MK, Singer S. Use of the Internet for health information by the chronically ill. Prev Chronic Dis. 2004 Oct;1(4):A13. A13
    1. Singh H, Fox SA, Petersen NJ, Shethia A, Street RL. Older patients' enthusiasm to use electronic mail to communicate with their physicians: cross-sectional survey. J Med Internet Res. 2009;11(2):e18. doi: 10.2196/jmir.1143. v11i2e18
    1. Nijland N, van Gemert-Pijnen J, Boer H, Steehouder MF, Seydel ER. Evaluation of internet-based technology for supporting self-care: problems encountered by patients and caregivers when using self-care applications. J Med Internet Res. 2008;10(2):e13. doi: 10.2196/jmir.957. v10i2e13

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