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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.
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.
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.
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,
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.
The way people retrieve health information has changed due to an enormous proliferation of new media technologies and a tremendous growth in health information being available online [
Two studies investigating online information sources about MS in English and German reported variable quality [
Research suggests that MS patients retrieve information about their disease and their physicians online before and after their medical visit, especially before the initial consultation due to potentially high information needs in the early course of the disease [
To determine the needs of and future options for patient education and patient–physician communication via new media, we sought to examine the current use of new types of communication (eg, mobile phone applications) and willingness to use these for medical management among MS patients. We hypothesized that patients who were already familiar with electronic communication devices would be more likely to adopt them for communication with health care providers and that the majority of MS patients would already be using an array of electronic communication devices.
The present study was a multicenter survey conducted in the Multiple Sclerosis Center Dresden (Dresden, Germany), the Multiple Sclerosis Center Stuttgart (Stuttgart, Germany), and several neurological outpatient centers of NeuroTransData GmbH (Neuburg, Germany) between 2009 and 2010. Patients with clinically definite MS according to the McDonald criteria were asked to attend the survey in each participating center over a period of 2 weeks [
The 18 items in the questionnaire were developed by a scientific advisory board consisting of physicians, psychologists, and computer scientists. The questionnaire surveyed the frequency and nature of personal computer, website, email, and mobile phone use by MS patients, as well as demographic characteristics. Specifically, the questionnaire included 4 demographic items about age, sex, time since MS onset (in years), and residential area (by postal code) (items 1–4), 5 items about computer use (items 5–9), 5 items about Internet use (items 10–14), and 3 items about mobile phone use (items 15–17). We added 1 item about the respondent’s general attitude toward using new media for communication with health care providers (item 18) (see
Patients were assigned to the
All statistical comparisons were 2-tailed, and a
In the statistical analysis, we included 586 of 591 MS patients who submitted answers to the last survey question (questionnaire item 18). The majority of study patients were female (408/586, 69.6%) with a mean age of 40.93 (SD 10.84) years (5 missing answers), comparing well with typical population statistics of patients with MD [
The vast majority of MS patients (558/586, 95.2%) had access to a computer and 75.4% (442/586) of them personally owned one (
Computer use by patients with multiple sclerosis (MS) (n = 586).
Computer use | % | n | ||
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Several times a day | 46.6 | 273 | ||
Daily | 24.2 | 142 | ||
Several times a week | 15.0 | 88 | ||
Once a week | 5.3 | 31 | ||
Rarely or never | 8.9 | 52 | ||
|
95.2 | 558 | ||
Own a computer | 75.4 | 442 | ||
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Browsing the Internet | 81.9 | 480 | ||
Emailing | 81.7 | 479 | ||
Word processing | 62.6 | 367 | ||
Getting information about MS | 39.6 | 232 | ||
Chatting | 12.5 | 73 | ||
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Definitely applies to me | 29.0 | 170 | ||
Mostly applies to me | 33.6 | 197 | ||
Slightly applies to me | 24.2 | 142 | ||
Does not apply to me | 13.1 | 77 | ||
Installation of computer programs | 64.4 | 375 |
About 94% of MS patients (551/586) reported they had Internet access (
Internet use by patients with multiple sclerosis (MS) (n = 586).
Internet use | % | n | |
|
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Several times a day | 34.6 | 203 | |
Once a day | 25.9 | 152 | |
Several times a week | 23.2 | 136 | |
Once a week | 6.1 | 36 | |
Rarely or never | 10.1 | 59 | |
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Broadband access | 69.6 | 408 | |
Low-speed access | 20.1 | 118 | |
No access | 6.0 | 35 | |
Access type unknown | 4.3 | 25 | |
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Browsing websites | 81.4 | 477 | |
Getting information about MS | 37.2 | 218 | |
Video chatting | 11.1 | 65 | |
Chatting | 10.2 | 60 | |
Communicating with other MS patients | 5.0 | 29 | |
Communicating with physician | 3.8 | 22 | |
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Several times a day | 31.1 | 182 | |
Once a day | 15.4 | 90 | |
Several times a week | 23.0 | 135 | |
Once a week | 11.6 | 68 | |
Rarely or never | 18.9 | 111 | |
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Several times a day | 37.2 | 218 | |
Once a day | 23.2 | 136 | |
Several times a week | 17.4 | 102 | |
Once a week | 9.2 | 54 | |
Rarely or never | 13.0 | 76 |
Nearly all MS patients possessed a mobile phone (553/576, 96.0%) but older patients used it less frequently (
When asked about the acceptability of using various modes of communication, including electronic communication devices, for receiving information and guidance from their physician for managing their MS, 20.5% (120/586) of MS patients accepted communication by mobile phone Internet application or short message service, 41.0% (240/586) by website, 54.3% (318/586) by email, and 67.8% (397/586) by at least one of these modes of communication (
We included media-specific items and demographic variables in all cross-sectional logistic regression models resulting in admissible model fits (Hosmer-Lemeshow test for email: χ2
8 = 7.0,
In general, patients with regular a priori use of new electronic media were more likely to accept this form of communication with health care providers (
Furthermore, online health information seekers (odds ratio 2.4) and patients having already communicated with their physician through a website (odds ratio 3.3) showed a greater interest in website-based communication (
Mobile phone use by patients with multiple sclerosis (n = 586)a.
Mobile phone use | % | n | ||
|
96.0 | 553 | ||
Missing answers (item 15) | 10 | |||
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Several times a day | 38.0 | 219 | ||
Once a day | 17.5 | 101 | ||
Several times a week | 21.5 | 124 | ||
Once a week | 7.6 | 44 | ||
Rarely or never | 14.2 | 82 | ||
Missing answers (item 16) | 16 | |||
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Calling | 89.1 | 513 | ||
Text messaging | 63.9 | 368 | ||
Scheduling | 21.7 | 125 | ||
Audio or video messaging | 5.2 | 30 | ||
Reading or sending emails | 4.9 | 28 | ||
Browsing websites | 4.7 | 27 | ||
Missing answers (item 17) | 16 |
a For all data percentages were based on valid answers.
Acceptance of modes of communication with health care providers for being informed and instructed during multiple sclerosis therapy (MS) by patients with MS (n = 586).
Type of communication | % | n |
By physician (in-person) | 92.0 | 539 |
By email or mobile phone or website | 67.8 | 397 |
By email | 54.3 | 318 |
By telephone call | 44.9 | 263 |
By website | 41.0 | 240 |
Via mobile Internet application or short message service | 20.5 | 120 |
Acceptance of new media types for communication with health care providers by patients with multiple sclerosis (MS).
Characteristics | Odds ratio | 95% confidence |
|
|
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Reading emails several times a day | 16.3 | 4.8–55.1 | <.001 | |
Reading emails daily | 13.1 | 4.2–41.0 | <.001 | |
Reading emails several times a week | 13.3 | 4.2–41.8 | <.001 | |
Reading emails once a week | 7.0 | 2.4–20.3 | <.001 | |
Reading emails rarely or never | 1 (reference) | |||
Sending emails several times a day | 1.0 | 0.4–2.6 | .97 | |
Sending emails daily | 1.4 | 0.6–3.7 | .45 | |
Sending emails several times a week | 1.4 | 0.6–3.3 | .43 | |
Sending emails once a week | 0.8 | 0.4–1.8 | .53 | |
Sending emails rarely or never | 1 (reference) | |||
Age | 1.0 | 0.8–1.2 | .88 | |
Females | 1.0 | 0.7–1.5 | .95 | |
Males | 1 (reference) | |||
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Browsing websites several times a day | 5.3 | 1.8–15.8 | .003 | |
Browsing websites daily | 5.2 | 1.8–15.4 | .003 | |
Browsing websites several times a week | 5.7 | 1.9–16.8 | .002 | |
Browsing websites once a week | 3.1 | 0.9–10.7 | .07 | |
Browsing websites rarely or never | 1 (reference) | |||
Using the Internet for browsing | 1.3 | 0.7–2.3 | .45 | |
Using the Internet for chatting | 1.4 | 0.8–2.7 | .30 | |
Using the Internet for video chatting | 1.5 | 0.9–2.7 | .13 | |
Using the Internet for information about MS | 2.4 | 1.7–3.5 | <.001 | |
Using the Internet for communication with physicians | 3.3 | 1.1–10.1 | .03 | |
Using the Internet for communication with other MS patients | 1.9 | 0.8–4.5 | .15 | |
Age | 1.1 | 0.9–1.3 | .49 | |
Females | 1.2 | 0.8–1.8 | .39 | |
Males | 1 (reference) | |||
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Using a mobile phone several times a day | 9.3 | 2.0–41.7 | .004 | |
Using a mobile phone daily | 5.9 | 1.3–27.3 | .02 | |
Using a mobile phone several times a week | 2.9 | 0.6–13.7 | .17 | |
Using a mobile phone once a week | 1.3 | 0.2–9.6 | .81 | |
Using a mobile phone rarely or never | 1 (reference) | |||
Using a mobile phone for calling | 6.9 | 0.9–52.4 | .06 | |
Using a mobile phone for text messaging | 1.3 | 0.8–2.3 | .32 | |
Using a mobile phone for audio or video messaging | 1.4 | 0.6–3.2 | .45 | |
Using a mobile phone for browsing websites | 1.3 | 0.4–4.2 | .62 | |
Using a mobile phone for sending and reading emails | 0.5 | 0.2–1.5 | .22 | |
Using a mobile phone for scheduling | 2.1 | 1.3–3.6 | .002 | |
Age | 0.9 | 0.7–1.2 | .59 | |
Females | 1.2 | 0.8–2.0 | .37 | |
Males | 1 (reference) |
a
In this survey, we analyzed the a priori use of computers, the Internet, emails, and mobile phones by patients with MS, as well as their willingness to adopt them for communication with health care providers. Our results indicate that the use of new communication technologies (computers, websites, emails, and mobile phones) by MS patients is already widespread. In addition, the majority of patients reported relevant information and communication technology skills such as installing software. Sharing information and receiving guidance in MS management via email and via website was well accepted among MS patients, with lower levels of acceptability for communication via mobile phone features (mobile Internet applications or short message service). A priori use was the most important predictor of accepting new media for communication with health care providers. Although differences in the a priori use of electronic communication devices between men and women and between younger and older patients were significant, neither sex nor age had an impact on the acceptance of these tools for communicating with health care providers.
The vast majority of MS patients had access to a computer or owned one themselves. They were regularly visiting websites, and reading and writing emails, and possessed a mobile phone, consistent with results of smaller MS-focused studies [
In our study, 4 in 10 MS patients were already using the Internet regularly for health information seeking and other disease-related tasks. In comparison, 56% to 61% of Americans searched online for health information [
In contrast to Hay et al [
In addition to the a priori use of electronic communication devices, we investigated the a priori attitude toward adopting these services for aiding in MS disease management. Most participants accepted more than one type of new media for communication with health care providers. Communication via email and website was considered as acceptable as conventional telephone calls. A notable proportion of patients perceived the integration of mobile phones and mobile Internet to aid their therapy as useful. Two-thirds of MS patients were willing to use at least one new media service for communication with health care providers. The main factor in accepting a service was a priori use. Patients who read emails at least once a week, browsed websites several times a week, and used a mobile phone daily were more likely to approve a type of communication. Likewise, current users of electronic communication devices for health care management showed a greater interest in Web-based communication.
Several studies support the open-mindedness of patients toward using email communication in disease management. Hassol et al [
Some limitations of our survey warrant consideration. Participation in the survey was nonrestricted and hence may have introduced selection bias by motivation or interest. However, this was minimized by the large number of participants. Moreover, relevant demographic data, such as income or ethnicity, that other studies had used were lacking in our survey. Therefore, we were unable to test assumptions about potential obstacles posed by new media such as the digital divide. As income is a sensitive issue, participants may not have been willing to specify their personal particulars. We conducted our survey using paper-and-pencil questionnaires to avoid selection bias. Differences in the methods of similar studies in defining and assessing media use are important when attempting to compare studies on the use of health care information and communication technology. The questionnaire provided only a single item for the acceptability of new communication methods with health care providers, which may have been insufficient to obtain nuance and detail about the patients’ true attitudes. We surveyed attitudes toward electronic communication devices but lacked data on actual behavior or objective use.
In our survey, we obtained data on the a priori use of new media by chronically ill patients with MS, as well as their attitudes toward future use of new media for communication with health care providers and differentiating between common communication types.
To summarize, our results indicate that the majority of MS patients are willing to use new media for further eHealth implementations. Although the potential benefits (and risks) of using electronic communication devices in MS health care services remain to be established, our data suggest these tools can be integrated with electronic health records and patient relationship management systems in order to increase the range of potential users and capabilities.
We agree with Nijland et al [
English version of the new media questionnaire.
Results of the survey on the use and acceptance of electronic communication by patients with multiple sclerosis.
English version of the new media questionnaire.
multiple sclerosis
Anonymous data collection from MS patients was supported by Merck Serono, Germany, which provided financial compensation for Dr Gottwald, Stuttgart, and NeuroTransData GmbH, Neuburg.
None declared.