Communicating Health Literacy on Prescription Medications on Social Media: In-depth Interviews With "Patient Influencers".

BACKGROUND: Historically, pharmaceutical companies have struggled with trust and brand reputation among key stakeholders and have adopted innovative marketing strategies to reach patients directly and rebuild those relationships. Social media influencers are a popular strategy to influence younger demographics, including Generation Z and millennials. It is common for social media influencers to work in paid partnerships with brands; this is a multibillion-dollar industry. Long have patients been active in online health communities and social media platforms such as Twitter and Instagram, but in recent years, pharmaceutical marketers have noticed the power of patient persuasion and begun to leverage "patient influencers" in brand campaigns. OBJECTIVE: This study aimed to explore how patient influencers communicate health literacy on pharmaceutical medications on social media to their communities of followers. METHODS: A total of 26 in-depth interviews were conducted with patient influencers using a snowball sampling technique. This study is part of a larger project using an interview guide that included a range of topics such as social media practices, logistics of being an influencer, considerations for brand partnerships, and views on the ethical nature of patient influencers. The constructs of the Health Belief Model were used in this study's data analysis: perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action, and self-efficacy. This study was approved by the institutional review board of the University of Colorado and adhered to ethical standards in interview practice. RESULTS: As patient influencers are a new phenomenon, it was our goal to identify how health literacy on prescription medications and pharmaceuticals is being communicated on social media. Using the constructs of the Health Belief Model to guide the analysis, 3 themes were identified: understanding disease through experience, staying informed on the science or field, and suggesting that physicians know best. CONCLUSIONS: Patients are actively exchanging health information on social media channels and connecting with other patients who share similar diagnoses. Patient influencers share their knowledge and experience in efforts to help other patients learn about disease self-management and improve their quality of life. Similar to traditional direct-to-consumer advertising, the phenomenon of patient influencers raises ethical questions that need more investigation. In a way, patient influencers are health education agents who may also share prescription medication or pharmaceutical information. They can break down complex health information based on expertise and experience and mitigate the loneliness and isolation that other patients may feel without the support of a community.

Come for Information, Stay for Support: Harnessing the Power of Online Health Communities for Social Connectedness during the COVID-19 Pandemic.

The COVID-19 pandemic created a globally shared stressor that saw a rise in the emphasis on mental and emotional wellbeing. However, historically, these topics were not openly discussed, leaving those struggling without professional support. One powerful tool to bridge the gap and facilitate connectedness during times of isolation is online health communities (OHCs). This study surveyed Health Union OHC members during the pandemic to determine the degree of COVID-19 concern, social isolation, and mental health distress they are facing, as well as to assess where they are receiving information about COVID-19 and what sources of support they desire. The survey was completed in six independent waves between March 2020 and April 2021, and garnered 10,177 total responses. In the United States, OHCs were utilized significantly more during peak lockdown times, and the desire for emotional and/or mental health support increased over time. Open-ended responses demonstrated a strong desire for connection and validation, which are quintessential characteristics of OHCs. Through active moderation utilizing trained moderators, OHCs can provide a powerful, intermediate and safe space where conversations about mental and emotional wellbeing can be normalized and those in need are encouraged to seek additional assistance from healthcare professionals if warranted.

Telemedicine Use and Health-Related Concerns of Patients With Chronic Conditions During COVID-19: Survey of Members of Online Health Communities.

BACKGROUND: It has been widely communicated that individuals with underlying health conditions are at higher risk of severe disease due to COVID-19 than healthy peers. As social distancing measures continue during the COVID-19 pandemic, experts encourage individuals with underlying conditions to engage in telehealth appointments to maintain continuity of care while minimizing risk exposure. To date, however, little information has been provided regarding telehealth uptake among this high-risk population. OBJECTIVE: The aim of this study is to describe the telehealth use, resource needs, and information sources of individuals with chronic conditions during the COVID-19 pandemic. Secondary objectives include exploring differences in telehealth use by sociodemographic characteristics. METHODS: Data for this study were collected through an electronic survey distributed between May 12-14, 2020, to members of 26 online health communities for individuals with chronic disease. Descriptive statistics were run to explore telehealth use, support needs, and information sources, and z tests were run to assess differences in sociodemographic factors and information and support needs among those who did and did not use telehealth services. RESULTS: Among the 2210 respondents, 1073 (49%) reported engaging in telehealth in the past 4 months. Higher proportions of women engaged in telehealth than men (890/1781, 50% vs 181/424, 43%; P=.007), and a higher proportion of those earning household incomes of more than US $100,000 engaged in telehealth than those earning less than US $30,000 (195/370, 53% vs 241/530 45%; P=.003). Although 59% (133/244) of those younger than 40 years and 54% (263/486) of those aged 40-55 years used telehealth, aging populations were less likely to do so, with only 45% (677/1500) of individuals 56 years or older reporting telehealth use (P<.001 and P=.001, respectively). Patients with cystic fibrosis, lupus, and ankylosing spondylitis recorded the highest proportions of individuals using telehealth when compared to those with other diagnoses. Of the 2210 participants, 1333 (60%) participants either looked up information about the virus online or planned to in the future, and when asked what information or support would be most helpful right now, over half (1151/2210, 52%) responded "understanding how COVID-19 affects people with my health condition." CONCLUSIONS: Nearly half of the study sample reported participating in telehealth in the past 4 months. Future efforts to engage individuals with underlying medical conditions in telehealth should focus on outreach to men, members of lower-income households, and aging populations. These results may help inform and refine future health communications to further engage this at-risk population in telehealth as the pandemic continues.

Assessment of Adaptive Engagement and Support Model for People With Chronic Health Conditions in Online Health Communities: Combined Content Analysis.

BACKGROUND: With the pervasiveness of social media, online health communities (OHCs) are an important tool for facilitating information sharing and support among people with chronic health conditions. Importantly, OHCs offer insight into conversations about the lived experiences of people with particular health conditions. Little is known about the aspects of OHCs that are important to maintain safe and productive conversations that support health. OBJECTIVE: This study aimed to assess the provision of social support and the role of active moderation in OHCs developed in accordance with and managed by an adaptive engagement model. This study also aimed to identify key elements of the model that are central to the development, maintenance, and adaptation of OHCs for people with chronic health conditions. METHODS: This study used combined content analysis, a mixed methods approach, to analyze sampled Facebook post comments from 6 OHCs to understand how key aspects of the adaptive engagement model facilitate different types of social support. OHCs included in this study are for people living with multiple sclerosis, migraine, irritable bowel syndrome, rheumatoid arthritis, lung cancer, and prostate cancer. An exploratory approach was used in the analysis, and initial codes were grouped into thematic categories and then confirmed through thematic network analysis using the Dedoose qualitative analysis software tool. Thematic categories were compared for similarities and differences for each of the 6 OHCs and by topic discussed. RESULTS: Data on the reach and engagement of the Facebook posts and the analysis of the sample of 5881 comments demonstrate that people with chronic health conditions want to engage on the web and find value in supporting and sharing their experiences with others. Most comments made in these Facebook posts were expressions of social support for others living with the same health condition (3405/5881, 57.89%). Among the comments with an element of support, those where community members validated the knowledge or experiences of others were most frequent (1587/3405, 46.61%), followed by the expression of empathy and understanding (1089/3405, 31.98%). Even among posts with more factual content, such as insurance coverage issues, user comments still had frequent expressions of support for others (80/213, 37.5%). CONCLUSIONS: The analysis of this OHC adaptive engagement model in action shows that the foundational elements-social support, engagement, and moderation-can effectively be used to provide a rich and dynamic community experience for individuals with chronic health conditions. Social support is demonstrated in a variety of ways, including sharing information or validating information shared by others, expressions of empathy, and sharing encouraging statements with others.

Perceived Treatment Satisfaction and Effectiveness Facilitators Among Patients With Chronic Health Conditions: A Self-Reported Survey.

BACKGROUND: Approximately 50% of patients are nonadherent to prescribed medications. Patient perception regarding medication effectiveness has been linked to improved adherence. However, how patients perceive effectiveness is poorly understood. OBJECTIVE: The aim of this study was to elucidate factors associated with perceived treatment satisfaction and effectiveness among patients with chronic health conditions. METHODS: We conducted a descriptive study using a cross-sectional survey design. We administered a Web-based survey to participants with migraine, multiple sclerosis (MS), or rheumatoid arthritis (RA). Patients were recruited from established online communities of Health Union. Descriptive statistics, correlations, and comparison tests were used to examine outcomes. RESULTS: Data were collected from 1820 patients: 567 with migraine, 717 with MS, and 536 with RA. The majority of participants were female (1644/1820, 90.33%), >40 years old (1462/1820, 80.33%), and diagnosed >5 years ago (1189/1820, 65.33%). Treatment satisfaction and perceived medication effectiveness were highly correlated (r=0.90, P<.01). Overall, three temporal factors were positively correlated with satisfaction or perceived effectiveness: time on current medication (satisfaction rs=0.22, P<.01; effectiveness rs=0.25, P<.01), time since diagnosis (satisfaction rs=0.07, P<.01; effectiveness rs=0.09, P<.01), and time on treatment (effectiveness rs=0.08, P<.01). CONCLUSIONS: Findings validated the strong relationship between treatment satisfaction and perceived effectiveness. Understanding the (1) positive relationship between time and treatment satisfaction and effectiveness and (2) factors associated with determining medication effectiveness can help clinicians better understand the mindset of patients regarding treatment. Clinicians may be better prepared to elicit patient beliefs, which influence medication adherence, for people diagnosed with chronic health conditions.

Attracting Users to Online Health Communities: Analysis of LungCancer.net's Facebook Advertisement Campaign Data.

BACKGROUND: With growing numbers of adults turning to the internet to get answers for health-related questions, online communities provide platforms with participatory networks to deliver health information and social support. However, to optimize the benefits of these online communities, these platforms must market effectively to attract new members and promote community growth. OBJECTIVE: The aim of this study was to assess the engagement results of Facebook advertisements designed to increase membership in the LungCancer.net online community. METHODS: In the fall of 2017, a series of 5 weeklong Facebook advertisement campaigns were launched targeting adults over the age of 18 years with an interest in lung cancer to increase opt ins to the LungCancer.net community (ie, the number of people who provided their email to join the site). RESULTS: The advertisements released during this campaign had a sum reach of 91,835 people, and 863 new members opted into the LungCancer.net community by providing their email address. Females aged 55 to 64 years were the largest population reached by the campaign (31,401/91,835; 34.29%), whereas females aged 65 and older were the largest population who opted into the LungCancer.net community (307/863; 35.57%). A total of US $1742 was invested in the Facebook campaigns, and 863 people opted into LungCancer.net, resulting in a cost of US $2.02 per new member. CONCLUSIONS: This research demonstrates the feasibility of using Facebook advertising to promote and grow online health communities. More research is needed to compare the effectiveness of various advertising approaches. Public health professionals should consider Facebook campaigns to effectively connect intended audiences to health information and support.

Impact on interpersonal relationships among patients with multiple sclerosis and their partners.

Aim: To determine how the diagnosis and symptoms of multiple sclerosis (MS) impact interpersonal relationships. Participants & methods: Data were obtained from a convenience sample of 1010 individuals with MS responding to an online survey; responses were compared with results of a fibromyalgia survey. Results: MS participants had few negative perceptions of relationships with romantic partners/children/close friends but described the impact of fatigue and limited mobility as feelings of being not well understood by others, burdensome and isolated. Conclusion: Despite increasing disability/pain severity, most patients with MS reported high satisfaction levels and few negative perceptions of relationships with romantic partners/children/close friends. Future research should focus on identifying effective coping strategies used by satisfied couples and improving access to high-quality relationship-enrichment programs.

More is not Always Better: An Epidemiological Assessment of Migraine Frequency and the Impact on Relationships.

OBJECTIVE: Chronic pain negatively impacts spouse/partner relationships, with greater impact associated with higher pain severity and co-morbid mood disturbance. This study investigated the role of pain episode frequency in migraineurs on relationship effects. METHODS: An online survey was conducted, collecting information about migraine, psychological distress, and relationship impact using standardized measures. Adults previously diagnosed with migraine were invited to participate through postings on migraine community websites and social media. Impact was evaluated based on four migraine frequency categories (migraines/month): less than weekly (0-3), one to two episodes weekly (4-9 and 10-15), and more than twice weekly (>15). RESULTS: A total of 1,399 adult migraineurs were included. Spouse/partner relationships had been mildly-moderately damaged for 30% with 0-3 migraine monthly, increasing to 40% with >15 migraine monthly. Migraine had contributed to a break-up for 4% with 0-3 migraines monthly, increasing to 8% for those with >15 migraines monthly. About 57% of participants reported satisfaction with their current spouse/partner, with satisfaction unaffected by migraine frequency among those who were satisfied with their partners. Negative impact on relationships with children and close friends also increased with migraine frequency. Depression and anxiety were significantly correlated with migraine frequency (P<0.001) and modulated relationship impact. CONCLUSION: As migraine frequency increased, negative impact on relationships also increased. Interestingly, satisfaction with current spouse/partner was high for all migraine frequency categories. Clinically, this suggests that frequent migraineurs may benefit from a referral to couples counseling with a therapist that specializes in medically ill.

Does complementary and alternative medicine (CAM) use reduce negative life impact of headaches for chronic migraineurs? A national survey.

BACKGROUND: Chronic migraine is a disabling condition that impacts multiple aspects of migraineurs' lives. Although pharmacological treatments can help to treat the pain associated with migraine headache, chronic migraineurs often experience side-effects of pharmacological treatments. Those experiences may contribute to the observed growth in complementary and alternative medicine (CAM) use among migraineurs. Relatively little is known about the patterns of CAM treatment and the characteristics of chronic migraineurs. Therefore, the purpose of the present study is to investigate the characteristics of chronic migraineurs who use CAM treatment and the relationship among satisfaction with current CAM use, negative life impact, migraine outcomes, and psychiatric comorbidities among chronic migraineurs. METHODS: 2907 participants were recruited from a well-known online migraine headache resource. All participants were US adults aged 18 years or older. Migraineurs are referred to this website through various routes (e.g., referral from healthcare providers, internet search, obtaining information from research papers, personal invitation from other users, and information shared on social media etc.). Participants completed a 30-min self-report-survey in the spring of 2014. RESULTS: Almost half of the participants reported that they are currently using more than three different CAM treatments even though the majority of the participants reported neutral or dissatisfied with their current CAM treatment. Chronic migraineurs who use CAM treatments were more likely to experience prolonged or frequent migraine headaches (p = .018, η(2) = .0021), and experience greater negative life impact from their headaches (p = .000, η(2) = .0172) compared to non-CAM users. CAM treatment satisfaction was inversely related to the number of psychiatric comorbidities, frequency of migraines, and number of migraine symptoms (p's < .05). However, CAM treatment satisfaction was more strongly correlated with migraine outcomes than psychiatric comorbidities. CONCLUSIONS: Chronic migraineurs often pursue multiple CAM treatments in spite of low levels of satisfaction with those treatments. Patients who experience relief from traditional treatments are less likely to seek the out additional CAM treatments. Thus it is often the sicker migraine patients who use CAM. More attention is needed to consider migraine treatment resistance, and psychological factors in planning the treatment of chronic migraineurs as those factors may play an important role in treatment choices by patients.

Migraine: treatments, comorbidities, and quality of life, in the USA.

This study sought to characterize the experience of stress, treatment patterns, and medical and disability profile in the migraineur population to better understand how the experience of migraines impacts the social and psychological functioning of this group. A 30-minute self-report survey was presented via a migraine-specific website with data collection occurring between May 15 and June 15, 2012. Recruitment for the study was done through online advertisements. In total, 2,907 individuals began the survey and 2,735 met the inclusion criteria for the study. The sample was predominantly female (92.8%). Migraine-associated stress was correlated with length of time since first onset of symptoms (P<0.01) and number of symptoms per month (P<0.01). Disorders related to stress, such as depression (P<0.01) and anxiety (P<0.01), were also positively correlated with the measured stress resulting from migraines. Migraine-associated stress must be understood as a multidimensional experience with broader impacts of stress on an individual correlating much more highly with negative mental and physical health profiles. Stress resulting from frequent migraine headaches may contribute to the development of medical and psychological comorbidities and may be a part of a cyclical relationship wherein stress is both a cause and effect of the social and medical impairments brought about by migraine.

The Chronic Migraineur and Health Services: National Survey Results.

Chronic migraine is a costly and highly disabling condition that impacts millions of people in the United States. While chronic migraine is hypothesized to result from more infrequent forms of migraine, the precise mechanism by which this develops is still being researched. This study sought to better characterize the treatment patterns, disorder characteristics, and medical and disability profile of the chronic migraine population using the largest dataset of chronic migraineurs ever collected. The survey was started by 8,359 individuals and 4,787 met the inclusion criteria for diagnosed chronic migraine The number of stressful life events participants experienced due to their migraines related to number of therapies tried (p<0.00, eta2=0.215), depression (p<0.00, eta2=0.178), number of comorbidities (p<0.00, eta2=0.172), anxiety (p<0.00, eta2=0.162), number of physician visits in the past year (p<0.00, eta2=0.103), and chronic pain levels (p<0.00, eta2=0.077).. The results of this survey suggest that chronic migraineurs may misattribute aspects of psychiatric or medical comorbidities to their chronic migraines. Further, the sample underutilized mental health services and were unsatisfied with their migraine treatments. Providers to chronic migraineurs should ensure that patients are receiving appropriate mental health care in order to alleviate psychological distress as well as to potentially lessen negative life events previously associated with migraine symptoms.

Fibromyalgia family and relationship impact exploratory survey.

BACKGROUND: Fibromyalgia is frequently associated with impairments in activities of daily living and work disability. Limited data have investigated the impact of fibromyalgia on relationships with family and friends. OBJECTIVES: This exploratory study was designed to survey a large community sample of adults with fibromyalgia about the impact on the spouse/partner, children and close friends. METHODS: A 40-question, multiple-choice survey was made available online for a two-month period, with potential participants recruited through fibromyalgia and migraine community websites. Items included questions about demographics, fibromyalgia symptoms, comorbid mood disturbance and relationship impact, including the Relationship Assessment Scale. RESULTS: The survey was completed by 6,126 adults who had been diagnosed with fibromyalgia. Using updated diagnostic criteria from the American College of Rheumatology, 91% satisfied the criteria for fibromyalgia (Fibromyalgia Severity score ≥13 and pain ≥3 months). Half of participants endorsed that fibromyalgia had mildly to moderately damaged relationship(s) with their spouse(s)/partner(s) or contributed to a break-up with a spouse or partner. Half of participants scored as not being satisfied with their current spouse/partner relationship, with satisfaction negatively affected by the presence of mood disturbance symptoms and higher fibromyalgia severity. Relationships with children and close friends were also negatively impacted for a substantial minority of participants. CONCLUSIONS: In addition to physical impairments that are well documented among individuals with fibromyalgia, fibromyalgia can result in a substantial negative impact on important relationships with family and close friends.

Survey of migraine sufferers with dogs to evaluate for canine migraine-alerting behaviors.

OBJECTIVES: Anecdotal reports suggest that changes in dog behavior might be used to predict impending migraine episodes. This survey was designed to investigate how companion dogs react to migraines that occur in their owners. DESIGN: Online survey was available from January 4-31, 2012. SETTINGS/LOCATION: Survey was conducted through SurveyMonkey, with links to the survey posted at Migraine.com and promoted through social media. SUBJECTS: Adults ≥18 years old who experience migraine episodes and live with a dog were eligible to participate. INTERVENTIONS AND OUTCOME MEASURES: Participants completed an 18-question online survey that asked about participant demographics, migraines, and their dog's behavior before or during migraine episodes. RESULTS: The survey was completed by 1029 adult migraineurs (94.9% women), with migraines typically occurring ≤8 days per month in 63.4% of participants. A recognized change in the dog's behavior prior to or during the initial phase of migraine was endorsed by 552 participants (53.7%), most commonly unusual attentiveness to the owner (39.9%). Among the 466 participants providing details about their dog's behavior with their migraines, 57.3% were able to identify dog alerting behavior before symptoms of a migraine attack would typically begin, with changes usually noticed within 2 hours before the onset of initial migraine symptoms. The dog's behavior was considered to be often or usually linked with the development of a migraine for 59.2% of migraineurs, and 35.8% of migraineurs endorsed beginning migraine treatments after the dog's behavior was recognized and before migraine symptoms had started. Participant demographics, migraine frequency, and breed of dog in the home were similar between the 470 participants with no alerting behavior endorsed and the 466 participants providing detailed alerting information. CONCLUSIONS: About one in four migraineurs living with a companion dog endorsed recognizing a change in their dog's behavior before recognizing initial symptoms of a migraine attack.