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An increasing number of patients are raising their voices in online forums to exchange health-related information. Facebook is the leading social media platform with more than 1 billion international daily users recorded in the summer of 2015. Facebook has a dynamic audience and is utilized in a number of ways, discussing medical issues being one of them. Ewing sarcoma mainly affects teenagers and young adults. Additionally, many individuals within this age group are regular users of Facebook. However, little is known about the impact of this modern way of communication via Web-based platforms on patients with Ewing sarcoma and their social environment.
The aim of this study was to analyze and compare Ewing sarcoma patients’ and relatives’ behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment.
We examined a Facebook group named “Ewing Sarcoma Awareness” that is used to exchange information for both patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients’ and relatives’ answers. Additionally, we analyzed all processes (posts, likes, threads, links) in the group for 6 consecutive months. A total of 65 members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study.
More than 70% (46/65) of all participants reported that they use the group Ewing Sarcoma Awareness as a source of information about Ewing sarcoma. Of the participants, 89% (58/65) agreed on our scale from a little to a lot that being in contact with other affected people through the group makes it easier to handle the diagnosis. In this study, 20% (13/65) of all participants reported that the group affected their choice of treatment and 15% (10/65) of participants were influenced in the selection of their specialist. Regarding the recommendation of the Facebook group toward other people, significant differences (
The Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Statements made within the group are in part questionable from a medical point of view and the impact made by these statements on patients’ care requires further evaluation.
Web-based communication is a convenient method of exchanging information regarding health and well-being and is thus increasingly growing in popularity and commonly used [
The term “Web 2.0” describes an interactive way of using the Web by exchanging information via blogs, platforms, podcasts, wikis, and online forums. These tools offer possibilities to simplify Web-based communication between Web users. In this way, the Web is not only a platform to acquire information from websites passively, but also a viable asset to create and share knowledge [
More precisely, the Web enables both experts and laymen to discuss and promote health-related information. Patients are increasingly using social media sites to share sorrow, to exchange information about handling their daily routine, and to discuss treatment options using evidence-based standard therapeutic regimens for various kinds of diseases. This development enables the creation of an active, self-managing, and responsible “expert patient” [
The leading social media platform presenting medical issues is Facebook (FB). With a record of more than 1 billion active users per day in August 2015, the website FB is besides “Google” the second most viewed site in the world [
The peak incidence of Ewing sarcoma is between 10 and 20 years of age and coincides with the main age group of FB users [
Ewing sarcoma is the second most common bone sarcoma after osteosarcoma with an incidence of 1 case per 1 million people [
The diagnosis Ewing sarcoma poses an enormous challenge for young patients, their families, and their social environment. Because of its severity, Ewing sarcoma requires a treatment concept including also psychological aspects. It is well reported that cancer patients profit from peer-to-peer communication [
It is well known that the Web, particularly social media platforms, offers new dimensions to communication related to medical topics [
However, little is known about patients’ and relatives’ behavior on social media platforms regarding Ewing sarcoma. The aim of this study was to examine the influence of interactive Web-based exchanges of information on the FB group “Ewing Sarcoma Awareness” (ESA) for patients with Ewing sarcoma and their relatives.
The most common way for a large number of people to communicate on FB is through “FB groups.” Facebook groups can be created by all FB users to communicate with a defined group of members about certain topics. To become a member of the group, one can either request to be a member or get an invitation from the group administrator.
In March 2014, we carried out a search for the term “Ewing sarcoma” using the FB search engine. The FB group used in this study is called Ewing Sarcoma Awareness. Ewing Sarcoma Awareness was by far the largest group we found for open Web-based communication for people affected by Ewing sarcoma. Ewing Sarcoma Awareness is defined as a public group and is available to all people with FB accounts. The group has two administrators who are able to control processes in the group. Facebook users are free to follow the group and to view all activity happening on the home page without being a group member. To become a member of the group a request has to be sent to the group administrators who grant admission to the group. The administrators are also able to remove group members or contributions posted to the page.
The ESA group’s main purpose, as declared in its description, is to facilitate the exchange of information regarding Ewing sarcoma for patients and other people affected by the disease (
At the time of our investigation, the group consisted of 2227 international members. Most group members indicated that they live in the United States or Canada, although group members were from countries in all continents of the world. The group administrators and creators did not appear to be medical professionals or associated with health care institutions or organizations [
To get in contact with the group we created a FB profile that introduced ourselves to the social media community (
Screenshot of the description of the Ewing Sarcoma Awareness group on Facebook.
Screenshot of the home page of our research Facebook profile.
We created a Web-based questionnaire using “SurveyMonkey” to analyze the group members’ behavior regarding their use of the Web and FB for people affected by Ewing sarcoma. SurveyMonkey.com was founded in 1999, and with more than 20 million users worldwide it is one of the leading platforms for Web-based surveys [
The self-designed questionnaire was developed on the basis of the “Checklist for Reporting Results of Internet E-Surveys” [
Accompanying this survey was background information of participants regarding sex, age, and whether participants were patients or their relatives or friends. Answering all questions took approximately 4 to 7 minutes.
We posted a link concerning our Web-based survey on the ESA group’s home page on FB (
All responses were automatically recorded via the Web-based survey platform [
Screenshot of our survey request on the Ewing Sarcoma Awareness group’s title page.
Besides the questionnaire, we analyzed all processes happening in the ESA group over a 6-month period (October 2013 to March 2014). The analysis referred to activities in the group, more specifically to threads and contributions that were posted on the group’s home page. We started by analyzing the content of each wall post to develop a classification scheme that could be applied to the complete observational time period.
All posts were divided into 2 main groups: informative and emotional contributions. We then further subdivided the 2 main groups each into 3 branches (
Classification of posts on the Ewing Sarcoma Awareness group’s home page.
Categories and subcategories | Description | |
Sharing fate/getting support | Group members are reporting about their case/destiny or occurring problems | |
Bereavement/recurrence | Group members are reporting the loss of a relative or child, or the recurrence of the disease | |
Complete remission/ |
Group members are reporting about successful treatments | |
Information | Group members are asking for helpful advice to handle the disease and the occurring side effects under the therapy | |
Clinical trials | Group members are asking for new trials or are sharing information about new studies | |
Recommendations | Group members are reporting about their experiences and satisfaction/dissatisfaction, or are asking for specialists/hospitals in their area |
After classifying the intentions of all posts, we evaluated the number of postings in each subgroup. Contributions deleted by the administrator or those without any classifiable content were excluded from our analysis. Three of the authors coded the data independently according to
Statistical analysis was performed comparing patients’ and relatives’ values for each of the 18 questions using
For statistical calculations SPSS version 22 (IBM Statistics, SPSS Software, IBM Vienna, Austria) was used. Data of all participants were anonymized. As all the information is publicly available, no review by an institutional research ethics board was needed.
The study group of our survey consisted of 65 participants: 26 patients and 39 relatives or friends of patients. Incomplete surveys (n=26) were excluded. Of the participants, 11 were male (mean 37.4, SD 14.4 years) and 54 were female (mean 39.8, SD 10.4 years). Average age of the patients was mean 32.9 (SD 8.4) years and that of the relatives was mean 43.6 (SD 10.1) years (
Age characteristics of study participants (N=65).
Age, years | Patients | Relatives |
20-25 | 4 | 1 |
26-30 | 8 | 4 |
31-35 | 4 | 6 |
36-40 | 4 | 5 |
>40 | 6 | 24 |
Total, n (%) | 26 (40) | 39 (60) |
The highest values for patients and relatives with a mean score of 3.01 (SD 0.87) were found in the first category of the questionnaire that focused on the users’ behavior. The second category that concerns the influence of the ESA group on participants’ therapeutic schedule yielded the lowest results for patients and relatives with a mean score of 1.91 (SD 0.91).
The maximum mean score per question for patients was found in question 15 with 3.65 (SD 0.69), followed by question 4 (mean 3.54, SD 0.58) and question 9 (mean 3.50, SD 0.76). Lowest agreements for patients were found in question 7 with a mean score of 1.46 (SD 0.86) followed by questions 6 (mean 1.54, SD 0.81) and 5 (mean 1.69, SD 0.97).
In addition, we compared the given answers from patients and relatives (
Survey results of patients and relatives.
No. | Question | Patients | Relatives | |||
Mean | SD | Mean | SD | |||
1. | I frequently (4=daily, 3=weekly, 2=monthly, 1=less) visit the Facebook group “Ewing sarcoma awareness” to be in contact with other affected people. | 2.85 | 1.12 | 2.87 | 0.92 | .92 |
2. | I post, comment, or like activities in the group or contact other group members via private messages. | 2.92 | 0.89 | 2.79 | 0.83 | .56 |
3. | I use the Facebook group “Ewing sarcoma awareness” as a source of information about Ewing sarcoma. | 3.04 | 0.96 | 3.10 | 0.79 | .78 |
4. | I recommend the Facebook group “Ewing sarcoma awareness” in other social networks or to other affected people. | 3.54 | 0.58 | 2.97 | 0.90 | .003 |
5. | The information I received in the Facebook group “Ewing sarcoma awareness” affected the choice of treatment. | 1.69 | 0.97 | 1.69 | 0.80 | .99 |
6. | The information I received in the Facebook group “Ewing sarcoma awareness” affected my choice of consultant. | 1.54 | 0.81 | 1.67 | 0.77 | .53 |
7. | The reliability of my consultant decreased because of information I received in the Facebook group “Ewing sarcoma awareness.” | 1.46 | 0.86 | 1.56 | 0.79 | .63 |
8. | I never had the experience that wrong information in the group “Ewing sarcoma awareness” led to a negative dealing with the disease. | 2.96 | 1.11 | 2.74 | 1.23 | .46 |
9. | Being in contact with other affected people via the Facebook group “Ewing sarcoma awareness” makes it easier to handle the diagnosis of Ewing sarcoma. | 3.50 | 0.76 | 3.49 | 0.72 | .95 |
10. | I received useful information in the Facebook group “Ewing sarcoma awareness,” which improved my everyday life in dealing with the disease. | 3.23 | 0.86 | 3.03 | 0.84 | .35 |
11. | I trust the Facebook group “Ewing sarcoma awareness” to receive correct information about Ewing Sarcoma. | 2.96 | 0.87 | 3.03 | 0.78 | .76 |
12. | The Facebook group “Ewing sarcoma awareness” is an important support for me to handle the disease. | 3.27 | 0.87 | 3.18 | 0.79 | .68 |
13. | I received information about new clinical trials as well as specialists through the Facebook group “Ewing sarcoma awareness.” | 2.38 | 1.16 | 2.28 | 0.94 | .71 |
14. | I take part in other Ewing sarcoma groups or forums on the Internet, including other social media platforms. | 3.23 | 0.99 | 2.85 | 1.11 | .16 |
15. | The Internet is an important tool for me to look for information about Ewing sarcoma. | 3.65 | 0.69 | 3.49 | 0.85 | .39 |
16. | I trust online platforms like Wikipedia, Twitter, YouTube, and Facebook to receive correct information about Ewing sarcoma. | 2.42 | 0.95 | 2.36 | 0.99 | .79 |
17. | I generally look for information about diseases on the Internet prior to consultation. | 3.00 | 1.01 | 3.15 | 0.87 | .53 |
18. | The Internet is an important source for me to look for health-related information. | 3.27 | 0.83 | 3.28 | 0.79 | .95 |
A total of 220 posts on the ESA group’s home page and 445 comments were included and categorized accordingly.
We detected a total number of 453 home page posts and 917 comments from 183 different group members. Because of lack of relevance or information, 233 posts and 472 comments were excluded from our study. These were reaction comments to previous posts or posts about everyday topics, not specific to Ewing sarcoma. The posts’ contents addressed subjects such as dietary supplements under chemotherapy, correct behavior as a family member, introduction to the group, and others. Overall, 125/220 (56.8%) posts in the ESA group were categorized as emotional posts and 95/220 (43.2%) as informative contributions. As shown in
Moreover, 15 articles about research results, fund raising, or donations were discussed in the forum. Some of these articles were deleted during the period of our observation by the group administrator.
Results of posts on the Ewing Sarcoma Awareness group’s home page.
With respect to our principal findings, the Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Reflecting on our results, we believe that a better understanding of this growing interest in peer-to-peer communication for patients may lead to an optimization of a patient-related therapeutic regimen.
The Web has rapidly grown to be one of the leading sources of medical information. It is well known that the Web, in particular social media communication, brings a new dimension to medical subjects followed by possibly improving health outcomes [
Several studies have described users’ behavior on FB for health-related issues [
Facebook is a ubiquitous social media platform including health-related issues. Bender et al [
The group ESA was by far the biggest platform (n=2227) we found on FB to exchange general information about Ewing sarcoma. Most other contributions about Ewing sarcoma on FB are blogs about fates of individuals and nonprofit institutions created for fundraising.
It is notable that more than 80% (54/65) of all participants of our Web-based survey were female. Pennbrige et al [
More than half of all participants were aged 36 years or older and 30/65 participants (45%) were older than 40 years. This explains why mainly parents of patients participated in the relative sample group. This is consistent with the incidence peak of the disease in the teenage years. However, the age of participants of our study differed from the age of participants of most other FB research studies [
According to the findings of Davison et al [
The Web in general has become the number one source of medical information for many patients [
Reliability and quality of health-related information found on the Web is considered generally questionable. According to our survey, 47% (30/65) of all participants agreed a little or a lot that they trust the information available on Web-based platforms such as Wikipedia, Twitter, YouTube, and FB, having confidence that the information is correct (Q16). Moreover, 15% (10/65) of patients and 26% (17/65) of relatives reported that wrong information received on the Web had negative effects on everyday life and the control of the disease (Q8). Brown et al [
Furthermore, we examined the influence of the ESA group on the patients’ selection of therapeutic regimens. We found that contents shared in the ESA group had relevant impact on the selection of treatment protocols, hospitals, and specialists. In this study, 20% of patients and 21% of relatives agreed a little or a lot that the group ESA affected their choice of treatment (Q5). Moreover, 19% of all patients reported that the group affected their selection of specialists (Q6). These statements indicate that FB has become an important source of information for patients with Ewing sarcoma and is affecting their treatment. These results underline the relevance of FB for patients with Ewing sarcoma and their treatment of choice [
At first sight, results of Q5-Q8 seem to be contradictory to the results of Q14-Q18 where there is a higher mean level of agreement to the statements made. However, the correlational analysis showed a significant positive correlation of all results (
The survey results comparing patients and relatives were similar. The only significant difference was found in question 4 (Q4: I recommend the Facebook group “Ewing sarcoma awareness” in other social networks or to other affected people). Patients achieved significantly (
Our post on the ESA group’s home page, where we invited all group members to participate in our Web-based survey, resulted in controversial reactions and started a lively debate among ESA group members. After reacting to critical posts and clarifying the survey’s credibility and intention of our research work, the number of participants increased.
A limitation of our study is the small sample size of the study group. Because of FB’s regulations we were unable to send all group members a request (via private message) to answer our survey. Facebook does not allow mass messages. Messages to people you are not connected with usually end up in the FB spam folder. The only way of attracting attention for our questionnaire was by posting on the group’s home page. Unfortunately, only members who are frequently following the group’s activities were able to see our contribution. A much longer study period might have increased the number of participants. Because of a lack of previous studies on the topic, a sample size calculation was not possible.
A total of 27% of all participants of our survey stated that they visit the ESA group monthly or less and, a total of 183 different ESA group members posted contributions on the group’s home page. According to these numbers it can be estimated that only a relatively small number of users compared with the total number of group members (n=2227) is actively involved in the processes of the group. Another drawback is that information flow (via private message) between ESA group members was not visible to us and could therefore not be analyzed.
Because a larger number of group members were US citizens, it can be expected that the outcomes of other geographical populations differ from our results.
Our findings suggest that FB is an important platform for many patients with Ewing sarcoma and their relatives. Because of the disease’s low incidence, the most comfortable and simplest way to get in touch with other patients might be via FB. Peer-to-peer communication seems to enable considerable support for patients and their relatives.
We believe that implementing interaction tools on FB can benefit patients and their social environment and help individuals deal with the diagnosis of Ewing sarcoma. Web-based communication on FB with others who are affected can be implemented in the multidisciplinary therapeutic regimen for patients with Ewing sarcoma.
However, incorrect medical information received on the Web is an evident weakness that FB groups have. Therefore, we suggest cautious application of health-related information found in FB groups.
In summary, the FB group ESA has a relevant impact on group members regarding treatment selection and in getting support through everyday life. Although the reliability and quality of information obtained from the Web is considered diverse, we believe that online forums are feasible tools for patients and relatives that help individuals not only find support and backing but also to share their experiences. The impact of Facebook regarding patients with Ewing sarcoma and their relatives who join such groups on the Web might be underestimated in traditional medical treatment regimens.
Reflecting on our results, we believe that questionnaires on social media platforms such as Facebook are suitable for a variety of scientific research questions in the future. Statements made in the group are in part questionable from a medical point of view and its impact on patient’s care needs further evaluation.
Ewing Sarcoma Awareness
question
standard deviation
The authors would like to thank all patients and relatives who believed, trusted, and participated in this study despite the tragic situation that many of them are facing.
None declared.