Negative Experiences and Concerns with Biologics
We found that online posts most commonly discussed the negative aspects of biologics (n = 247, 54.6%). The most frequently discussed topic revolved around side effects experienced as a result of taking biologics (n = 100). Here, individuals discussed specific side effects, such as fatigue, rash/skin issues, infections, hair loss, and headaches (Fig. 2). Aside from experienced side effects, individuals also expressed concerns about potential side effects (n = 60), increased cancer risk (n = 19), pregnancy safety (n = 19), and a weakened immune system (n = 16).
Below are representative examples of social media posts from individuals who experienced side effects after using biologic therapies:
I have been on [Biologic X] for over a year and while it seems to be helping my Crohn's disease, I can't stand the reactions anymore. The first few infusions ended me in the hospital with flu like symptoms, and then I got sick during another one and they gave me some drugs to counteract the effect. Now for about 7 months I have been breaking out with horrible burning rashes on my hands and feet and nothing takes away the pain.
[Biologic X] gave me a lot of immune system issues. Small cuts would get infected and spread, requiring antibiotics, and I had major swelling in my glands/lymph nodes. Scared the beejeebus outta me.
[Biologic X] made about 65% of my hair fall out before my doctor stopped the treatment.
The possibility of developing cancer was also an important issue discussed by individuals either taking or considering starting biologic medications:
I am quite nervous about starting this medication. Although I know that the Crohn's needs to be treated, the potential side effects of [Biologic X] that I have read about scare the heck out of me. I have read that people of my age/sex are more prone to the cancer side effects. I'm worried about working on one problem and starting a whole new one.
Decision-making Surrounding Biologic Use
One hundred sixty-nine online posts (37.3%) captured the decision-making processes surrounding use of biologics. Specifically, these posts commented on nonbiologic treatment options (n = 93) and hesitation to initiate (n = 28), change (n = 26), and discontinue biologics (n = 22).
We found that individuals discussed various medication attributes as they sought to reach a balance between perceived potential benefits and risks. In this case, an individual describes a perceived high risk of developing cancer with the potential for seeking relief from serious IBD symptoms:
Feeling like death again. Has anyone been on [Biologic X] for Crohn's or UC? I'm a little terrified to start a biologic (hey, what's up very increased risk of cancer?), but I seriously cannot be sick like this anymore.
Our analyses also revealed that individuals considered the negative side effects they experienced after taking biologic therapies when making decisions about whether to continue or discontinue these medications. In these examples, the individuals developed intolerable side effects and subsequently decided to discontinue the drug:
I have a moderate to severe case and was pretty quickly put on [Biologic X]. It worked pretty well for me, but after the first couple of years I started noticing more of the side effects of the drug. I would have dizzy spells, cold spells, and constant infections all over my body. Because of these side effects, and because I know these drugs only work for so long on most patients, I decided to take another route.
I was on [Biologic X] for almost 4 years and began having adverse reactions-psoriasis, rashes, dry eyes and lupus-like symptoms. When I stopped [Biologic X], these issues began going away. I tried [Biologic Y] and symptoms began again. I stopped everything but Imuran and have been doing better. The side effects to me were much much worse than the Crohn's. No doctor would say that the [Biologic X] caused the problems but clearly, I am better now without taking it.
By contrast, the individuals below found the side effects to be more tolerable than the symptoms from IBD, and decided to continue taking the biologics.
[Biologic X] works for me, thank god. Yes there are some side effects, but in comparison to being deadly ill - it is worth it.
I am currently on [Biologic X], in fact I'm going to get a treatment today. I always feel sick for a few days after… flu-like symptoms and very fatigued. I usually feel this way for about 3 days after. But it's worth it for the relief of my Crohn's symptoms.
Individuals, particularly those who expressed frustration with the effectiveness of the biologics at managing IBD, also discussed the use of nonbiologic treatment options and natural remedies and diets:
I refuse to take chemicals. I've taken everything including [Biologic X], which caused an allergic reaction on the 3rd treatment. Eating the proper foods, vitamins, plenty of rest/relaxation, stay as stress free as possible, ridding the body of toxins & impurities are the natural healers for Crohn's.
Amazing what adding bioavailable juices of 17 fruits and vegetables daily has done for my health. No joint pain, no fatigue, no gingivitis, more energy, no Crohn's and no more [Biologic X], 6-MP, steroids, etc. Best I've felt in ten years!
I'm thinking of taking classes on herbalism and natural healing! I'm on too many bio meds that don't even help me. So I'm going natural once my cycle of [Biologic X] is done. It hasn't helped me one bit and the thought of all those chemicals going in me for nothing is frightening!
Positive Experiences with Biologics
We found 168 posts (37.2%) where individuals expressed positive experiences with their biologic therapies based on symptom improvement (n = 158) and even remission (n = 32). Example posts include:
I was so bad with Crohn's. All meds stopped working, I was hours away from death and they gave me the [Biologic X]. After the first 3 minutes the doctor said ‘You are going to be fine.’ Thank god, it’s a great treatment.
[Biologic X] + Methotrexate worked great for my daughter - 9 months after diagnosis, she had almost clean scopes!! The [Biologic X] infusions are very easy - my daughter even quite enjoys them because she gets a chance to relax, read and watch TV (and miss school).
I have been doing very well on the [Biologic X] and have happily been pretty much symptom free for about a year.
Information- and Support-Seeking from Online Community
We uncovered 125 posts (27.7%) that highlighted the importance of the online community in supporting individuals as they navigated the available biologic treatment options. Most of these individuals went online seeking specific information about biologics (n = 86). Some looked for support and reassurance about their IBD illness experience and information on other IBD-related issues (n = 37). For example, the 2 individuals below acknowledged the support of online IBD health forum communities and provided words of encouragement, respectively:
I was really sick for the last two years and it's really sucked. Some days I thought I might be dying. No one knew what was wrong with me. I was finally diagnosed in May and I found the spoonie community on Tumblr, which has been one of the biggest supports since then…I just started [Biologic X] though and I'm feeling a lot more like my old self.
It's a cruel, cruel disease. And as you in particular know, the drugs to treat it can be equally as cruel. I really hope you get a break soon. You and your wife deserve it…I was diagnosed 4 years ago, at age 25. After a year on steroids, I was put on azathioprine (they didn't agree with me) and [Biologic X] (stopped because I was given too much and had anaphylaxis). BUT I am now on 6mp (mercaptopurine) and [Biologic Y] injections…They're working for my Crohn's symptoms.
Moreover, we also found that even after individuals received medical advice from their health care providers, many still turned to social media with questions and to validate their experiences. Representative posts include:
On [Biologic X] and Imuran. Crohn's symptoms are cut in half, but side effects from meds are ridiculous! Is it like this with all immunosuppressants and biologics combined, or should I try another combination? GI tells me to wait and give meds more time. Not sure of which is worse, the Crohn's or the drugs. Anyone else?
[Biologic X] question: I have been lurking here since diagnosis in 2006, the help has been awesome. I had a resection, small bowel, this past December, pancreatitis from 6mp and now I am on [Biologic X]. I feel my Crohn's is still active, since they did not remove all disease with surgery. My GI wants to do pill cam again. Have had one infection after another (UTI) and have been on antibiotics off and on for eight months, due to [Biologic X], I think. Now, finally my question… would it be unreasonable to stop [Biologic X]?
My daughter was diagnosed with Crohn's in November. We have tried all kinds of meds. They want us to think about [Biologic X]. We are so scared to start it after reading all the terrible things that could happen after taking it. Is it worth the risk?
Cost of Biologics
Finally, a small number of online discussions (n = 38, 8.4%) commented on the costs of biologic therapies. The posts expressed users' concerns about their inability to pay for biologics due to their high cost, and their fears and anxieties about losing the benefits obtained from these therapies:
I am desperately trying to raise 1500.00 for a [Biologic X] treatment. As most know I have Crohn's disease. Thanks to [Biologic X] I am now in remission. I need this treatment to stay healthy. If you can help all donations can be made through PayPal using my email. Thank you for your help and support.
I've been fine since I started [Biologic X] 8 years ago, however I just turned 21 and lost CCS (California Children's services) and Medi-Cal. So I haven't had a [Biologic X] infusion in 23 weeks and I can feel the abscess that follows the fistula coming back. I seriously don't know what to do, I have no medical insurance and no [Biologic X] and I'm about to graduate college. Does anybody know of anything I can do? I'm kinda panicking.
Our analysis also illustrated that even individuals with health insurance still described issues either obtaining coverage for their medication or covering copayments.
My health insurance would no longer pay for the [Biologic X] shots. It's expensive at $4300.00 per month for insurance, but works in reducing flare ups or putting Crohn's in remission.
It has been suggested I may have to go on [Biologic X] for my UC. But I would only be entitled to 3 sessions due to costs? Is this right?
Social netnography analysis reveals a wide range of themes governing patients' experience and choice with IBD biologics. Five main themes emerged, which included negative experiences and concerns about biologics, decision-making surrounding biologic use, positive experiences with biologics, information- and support-seeking from the online community, and cost concerns.
This study demonstrates how social media can serve as a promising data source that offers unique opportunities for studying specific patient populations,11,13–16 such as those from the IBD community. With a growing number of social media users worldwide,17 social netnography will become an increasingly important methodological tool, especially as it has a number of advantages over traditional qualitative methods, such as focus groups and in-depth interviews. For example, by collecting and analyzing passively collected social media data, it allows for content classification similar to that obtained during traditional methods, but without introducing observation bias (i.e., Hawthorne effect).11 This leads to analyses of unfiltered conversations free from the constraints of focused questions and the inherent biases from focus group leaders and interviewers. Social netnography also allows for collection of large amounts of data on a scale that far surpasses sample sizes from traditional methods, such as focus groups or individual cognitive interviews. In short, social netnography is akin to a large-scale virtual focus group not bound by physical locale and not subject to the Hawthorne effect.
Findings from our study continue to demonstrate the marked complexity that patients face as they consider the risks and benefits of initiating, changing, or discontinuing biologics. Navigating such risk–benefit profiles will become even more complex as additional biologics, some of which have novel mechanisms of action, become available for clinical use in the near future. Although our study provides insights into patients' understanding of the risks and benefits associated with biologic therapies, further research to better understand how patients navigate biologics' risk–benefit profiles in the decision-making process are needed. Methods such as adaptive choice-based conjoint analyses18 can quantitatively assess what biologic attributes (e.g., mode of administration, effectiveness, associated lymphoma risk) matter most to patients when choosing among the various therapies. This is the subject of our future research, and we aim to understand what the IBD population-at-large values most when deciding among competing biologic options. Yet, we should note that the decision-making process is highly individualized; one person's preferences may not necessarily match closely to the preferences for the “average” IBD patient. This is where online tailored decision tools that capture a patient's knowledge, attitudes, and beliefs could support both the patient and the provider in the shared decision-making process.
We also found that more than 25% of posts involved biologic information- and support-seeking from peers. Even those who already saw a physician still turned to their social media peers with questions and to seek validation. Yet, the quality and accuracy of such information obtained through social media forums is unknown. Previous studies found that quality of IBD websites varies widely; some are too difficult to comprehend or contain out of date information.19–23 It is likely that IBD information found on social media also suffers from similar issues. Because of the increasing number of IBD patients searching on-line for health information,24 informed stakeholders (e.g., health care providers, patient advocacy societies, professional societies) should have a presence in social media to improve the quality and accuracy of online IBD- and biologics-related information.
Our study is limited because there is risk of selection bias. The sample only included those who post on social media and health-focused websites, and our findings may not be generalizable to all IBD patients. Some IBD patients, particularly individuals with privacy concerns or who do not have Internet access, may not regularly post on social media. Additionally, we were unable to capture all online discussions surrounding biologics and IBD. For example, posts that discussed biologics without directly mentioning a specific medication as well as those written in languages other than English were not included in this study, leading to potential selection bias. Yet, it is unclear whether those who do not engage in social media or non-English speakers have different IBD and biologic experiences. Moreover, Internet use is nearing saturation, and more than two-thirds of all Americans currently use social media, including over one-third of seniors.17 There also may have been patient misclassification, as we did not confirm IBD diagnoses or have access to linked ICD-10 codes. However, several publications evaluating the reliability of self-reported diagnoses of chronic diseases and treatments have found high validity of such self-reports.25–30 Furthermore, IBD, CD, and UC are specific diagnoses made by health care providers, which is in contrast to disorders such as irritable bowel syndrome and Celiac disease where individuals may self-diagnosis themselves. Our study also specifically focused on biologic therapies in IBD, which should have eliminated subjects with self-reported GI illnesses for which biologic therapies would not be prescribed.
In summary, our analysis of passively collected social media data revealed a wide range of themes describing experiences with biologic therapies in the free-range lives of those with IBD. With the increasing number of biologic therapies available to those with IBD, it is becoming more complex for patients to weigh the risks and benefits when deciding to initiate, change, continue, or discontinue biologics. Further research to better understand how IBD patients navigate biologics' risk–benefit profiles is warranted. Efforts are also needed to improve communication between patients and providers when discussing biologics' risks and benefits and to create online decision tools that support them in the treatment decision-making process.
The authors would like to thank and acknowledge Julia Shklovskaya, MPPA, (Takeda Pharmaceuticals, U.S.A., Inc.) for her project management and support.
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inflammatory bowel disease; biologic medications; social netnography
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