E-Patients and Chronic Illness:Commonalities and Differences among Breast Cancer, Multiple Sclerosis and Marfan Syndrome Health E-Community Members
|
If you are the presenter of this abstract (or if you cite this abstract in a talk or on a poster), please show the QR code in your slide or poster (QR code contains this URL). |
Abstract
Background. Investigators have studied online health information and support seeking strategies for cancer and other common chronic illnesses, but there have been fewer studies of e-patients with other chronic conditions or comparisons across illness communities.
Objective. To inform the development of Health 2.0 resources for Internet users living with chronic health problems by better understanding their current e-health information and support seeking behaviors and future needs.
Methods. We used a web survey to explore how people with diverse conditions may differ in their experiences in four contexts: seeking treatment-related information (RQ1); seeking information from experts; seeking additional resources (RQ4); and seeking meaningful social support (RQ4).
Recruitment. Listowners of three health e-communities (HeCs), the Metastatic Breast Cancer Information and Support list, Multiple Sclerosis World and Marfan Life Forum, permitted us to post invitations to their groups that included links to our web survey.
Analysis. For each research question, we used multiple items to create indices of different kinds of e-patient experiences and attitudes. In the two-stage analysis, we performed descriptive analyses of participant responses for the entire sample and planned comparisons between illness groups.
Results
Sample size. 127 out of 160 surveys (82%) were completed.
RQ1. Most participants had searched for information about current treatments (87.4%) or side effects (87.4%). Approximately 25% of these participants experienced problems finding what they needed. Approximately 40% of participants sought information about clinical trials or recommendations for health care providers. Of these, many reported that it was harder to find recommendations for providers (71.7%) than it was to find information about clinical trials (37.3%).
RQ2. Regarding searching for online information on chronic conditions from experts, 86.6% of participants reported that they searched comprehensive health information websites, 76.4% sought articles in online scientific journals; 70.9% sought news articles and 55.1% searched for doctors' presentations on their specific conditions. Of those who searched for expert online information, over half found it hard to find relevant doctors' presentations on their conditions; approximately one third had trouble finding relevant news articles.
RQ3. 55.1% of participants had searched for recommendations for products and services to alleviate symptoms or enhance wellbeing; 29.9% sought information on health insurance. Of those who sought information on health insurance, over three-quarters had trouble finding what they needed.
(RQ4) 82.7% of participants reported that they had sought HeCs where they could find other people who had the same condition. Of these, nearly a fifth had difficulty finding HeCs that met their needs. 36.2% of participants reported that they had sought HeC support for problems related to chronic disease polymorbidity. Of these, over a third had problems finding HeCs addressing the same combination of conditions.
Between group comparisons. Overall, MarfanLife members encountered the significantly more problems finding treatment-related information (p.>.05), relevant comprehensive websites(p<.05), and recommendations for health quality of life-related products and services (p<.05). There were no significant differences among groups in difficulty finding social support.
Conclusions. Participants showed strong similarities in their activities and outcomes in seeking information or support online. They also expressed desires for—and interest in sharing--highly nuanced, individualized, and timely information for coping with the uncertainties of chronic illness trajectories, treatments and side effects. These findings point to the need for Health 2.0 e-community platforms that utilize Web 2.0 and social media capabilities to capture, organize and retrieve the relevant information on specific health conditions and the common concerns of people with chronic conditions.
Objective. To inform the development of Health 2.0 resources for Internet users living with chronic health problems by better understanding their current e-health information and support seeking behaviors and future needs.
Methods. We used a web survey to explore how people with diverse conditions may differ in their experiences in four contexts: seeking treatment-related information (RQ1); seeking information from experts; seeking additional resources (RQ4); and seeking meaningful social support (RQ4).
Recruitment. Listowners of three health e-communities (HeCs), the Metastatic Breast Cancer Information and Support list, Multiple Sclerosis World and Marfan Life Forum, permitted us to post invitations to their groups that included links to our web survey.
Analysis. For each research question, we used multiple items to create indices of different kinds of e-patient experiences and attitudes. In the two-stage analysis, we performed descriptive analyses of participant responses for the entire sample and planned comparisons between illness groups.
Results
Sample size. 127 out of 160 surveys (82%) were completed.
RQ1. Most participants had searched for information about current treatments (87.4%) or side effects (87.4%). Approximately 25% of these participants experienced problems finding what they needed. Approximately 40% of participants sought information about clinical trials or recommendations for health care providers. Of these, many reported that it was harder to find recommendations for providers (71.7%) than it was to find information about clinical trials (37.3%).
RQ2. Regarding searching for online information on chronic conditions from experts, 86.6% of participants reported that they searched comprehensive health information websites, 76.4% sought articles in online scientific journals; 70.9% sought news articles and 55.1% searched for doctors' presentations on their specific conditions. Of those who searched for expert online information, over half found it hard to find relevant doctors' presentations on their conditions; approximately one third had trouble finding relevant news articles.
RQ3. 55.1% of participants had searched for recommendations for products and services to alleviate symptoms or enhance wellbeing; 29.9% sought information on health insurance. Of those who sought information on health insurance, over three-quarters had trouble finding what they needed.
(RQ4) 82.7% of participants reported that they had sought HeCs where they could find other people who had the same condition. Of these, nearly a fifth had difficulty finding HeCs that met their needs. 36.2% of participants reported that they had sought HeC support for problems related to chronic disease polymorbidity. Of these, over a third had problems finding HeCs addressing the same combination of conditions.
Between group comparisons. Overall, MarfanLife members encountered the significantly more problems finding treatment-related information (p.>.05), relevant comprehensive websites(p<.05), and recommendations for health quality of life-related products and services (p<.05). There were no significant differences among groups in difficulty finding social support.
Conclusions. Participants showed strong similarities in their activities and outcomes in seeking information or support online. They also expressed desires for—and interest in sharing--highly nuanced, individualized, and timely information for coping with the uncertainties of chronic illness trajectories, treatments and side effects. These findings point to the need for Health 2.0 e-community platforms that utilize Web 2.0 and social media capabilities to capture, organize and retrieve the relevant information on specific health conditions and the common concerns of people with chronic conditions.
Medicine 2.0® is happy to support and promote other conferences and workshops in this area. Contact us to produce, disseminate and promote your conference or workshop under this label and in this event series. In addition, we are always looking for hosts of future World Congresses. Medicine 2.0® is a registered trademark of JMIR Publications Inc., the leading academic ehealth publisher.
This work is licensed under a Creative Commons Attribution 3.0 License.