Biologic therapies increasingly play a central role in the treatment of autoimmune disease in patients who are refractory to conventional DMARDs. While evidence of their efficacy and tolerability is compelling, patient perspectives on these therapies are less well understood. In this study, we examined patient perspectives on biologics but also their sources of information about these therapies.
Our findings highlight the importance of specialists in providing information about biologics to patients but also the recognition that people frequently obtain information from multiple sources, some of which (such as relatives, friends or social media) are not favourable towards these medications. Importantly, respondents in this survey who were more concerned about biologics were more likely to use social media for information though it is difficult to ascertain the directionality of this relationship.
Respondents with IA and IBD were generally similar, with the younger age and longer disease duration of IBD patients explained by the typical peak age of onset of IBD being in the 20s with 10–20% of cases diagnosed in childhood [20] compared with RA which is most common in middle age [21].
Specialist nurses are well recognised as key parts of patients’ healthcare teams [22, 23], and our study highlights the disparity that exists between rheumatology and gastroenterology in this area, reflecting that in Australia, there are only approximately 50 rheumatology nurses to support 1.7 million people with IA [24] compared with 120 IBD nurses for 100,000 people with IBD [25].
The very low proportion of respondents in this survey who were currently using biosimilars is surprising and calls into question whether patients are aware of being on biosimilars or bio-originators and if they are being appropriately informed about switching, as we were not able to confirm the actual medication the patients were using.
Performing a questionnaire such as this one on a national scale, with two comparable populations accessing similar medications, is unique. Our results are similar to prior investigation of the attitudes of patients with rheumatoid arthritis towards methotrexate, where it was reported that specialists were the most frequently consulted and most favourable towards the drug whereas internet resources were more variable in their perspectives, with social media and chat rooms being generally negative [17].
The role of social media as an information source is becoming increasingly realised. It provides an extensive resource of information, discussion and shared experiences which can be empowering for patients and encourage them to discuss their condition and treatment options with healthcare providers [26]. However, the perils of inconsistent, unreliable or misinterpreted information have also been particularly realised in the current pandemic situation [27]. Though our results suggest that social media is generally negative in its perspective on biologics, previous social media mining suggests that public sentiment towards b/tsDMARDs is still more positive than in regard to conventional synthetic DMARDs [28].
At the time that this survey was conducted, biosimilars for infliximab, etanercept, adalimumab and rituximab were registered with the Therapeutic Goods Administration (TGA) in Australia. Though the proportion of respondents in the present study who had heard of biosimilars (64.4%) may seem low, it is higher than in surveys published in the last five years involving participants with IA [29] as well as IBD [30] where typically, less than 50% of respondents are aware of biosimilars. It also highlights the rapid increase in awareness of biosimilars amongst patients in a short span of time when compared with an Australian cross-sectional study of patients with RA in a public tertiary-referral hospital rheumatology clinic in 2017, prior to the introduction of the etanercept biosimilar to the Australian PBS, where only 6% of patients had pre-existing knowledge of biosimilars [31].
It has previously been noted that patients on biosimilars had greater confidence in their efficacy, trusted their doctor’s decision to use biosimilars and perceived that their use reduced costs to the health care system; in contrast, those on bio-originators thought that the cost of treatment should not influence prescribing [32]. This may explain why the present study’s respondents, almost all of whom reported that they were on bio-originators, were hesitant towards and placed low importance on the financial benefits of biosimilars.
The implications of this current study are significant to the clinical practice and service delivery of rheumatology and gastroenterology. A consistent message in our results which has also been found in previous surveys of patient attitudes to biologics overseas [11] is the importance of specialists in information provision, reinforcing the ongoing need to be consistent, up-to-date and accurate regarding biologics and biosimilars, while simultaneously aware that there may be intersecting or contrasting messages obtained from resources outside the clinical interaction. Similarly, patient factors such as reading ability and general concern about medications need to be considered so that information is patient-centred and personalised.
Increased training and implementation of rheumatology specialist nurses is also a key area of need in Australia. As demonstrated by respondents with IBD, information from a specialist nurse is valuable but for people with IA, limited significantly by access and availability.
A key strength of the present study was gathering information from around Australia in people with IA and IBD, to assess if despite having quite different diseases, they have similar experiences regarding biologic medications. Another strength was the integration of contextual factors (demographics, beliefs about medications and reading ability) to allow a more granular appreciation of possible determinants of information resource selection.
There are some salient limitations to mention. Comparisons between respondents with IA and IBD were limited by the inequality in the sample sizes of each group and consequently, results are skewed towards the IA group. There is also an inherent selection bias in an online survey written in English and distributed through consumer groups which may not reflect real life clinic patient populations. Collection of data on socioeconomic status and formal education levels may have allowed further analysis of data when combined with the SILS. The survey was self-reported and relied on respondents’ understandings of their diagnoses as well as medications, which is not always accurate. Finally, this data was collected in 2020 and awareness of biologics, particularly biosimilars, may well have increased since then, along with more positive attitudes towards them with more frequent prescription and acceptance by physicians and patients.