2.       Introduction 

Rheumatoid Arthritis (RA) typically affects small joints of the hands and feet in a symmetrical pattern [1], causing synovial inflammation and joint destruction, muscle atrophy and loss of function [1,2]. The pain and joint deformity are often associated with disability, depressive symptoms, a negative impact on social relationships and poorer health related quality of life [3-5]. Key to more successful outcomes in chronic disease are effective self-management strategies [6], particularly as long-term conditions such as RA have been associated with poor treatment adherence and less positive outcomes [7]. 

Social media encompasses services including blogs, wikis, virtual worlds and social networking sites that utilise platforms to integrate participation, communication, user-centerdness, collaboration and openness [8]. Social media usage continues to grow worldwide with a projection of 2.77 billion users by 2019, up from 2.46 billion in 2017 [9]. In the UK, almost three quarters of adults use mobile devices for internet access, more than double the number reported in 2011 [10]. Social media is now part of daily life for many, routinely used for entertainment, education, financial management, and increasingly for health information and support [11]. 

Those with chronic disease are more likely to use social media to access health literature and aid self-management [12]. Users create and link networks of people with shared interests/experiences in a user-centric and collaborative manner, which could play an important role in patient-centred care [9,11,13]. Virtual worlds and online discussions have facilitated the creation of a collective forum of knowledge about chronic medical conditions that was seldom previously accessed [12]. Using social media to access information can empower and support those with RA and provide an alternative resource that will reduce the burden of treatment and ease social pressures [12]. In chronic disease management where lifestyle behaviours can have an impact upon people’s wellbeing, this approach is valuable [11,14]. Social media may not only ease the burden of self-management in chronic disease, but also offer opportunities to meet patients’ needs that are not met in traditional face-to-face clinical encounters [15]. Potentially, health professionals could share accurate, real-time health information while maintaining professional boundaries and patients’ privacy rights [11, 14-16], the latter being a particular concern for patients and professionals alike [17]. 

Software applications (apps) are computer programmes designed to run on mobile devices (smartphones, tablets or smartwatches). The use of apps on mobile phones has increased considerably, and varies with the user’s context, location and the time of day [18,19]. In healthcare, many apps can assist practitioners with day-to-day tasks (time management, e-records, consultations, information gathering, patient monitoring, and so on) [19], and in some chronic diseases, such as diabetes, apps currently exist to aid self-management [18,19]. A recent systematic review concluded that mobile devices with enabled apps could perform important roles in patient education, self-management, and remote monitoring [20]. 

In RA, disease activity calculators [20] and forums for symptom reporting [21] do exist, but there is limited evidence of social media usage, or of professionals recognising the potential role of apps in the self-management of inflammatory arthritis. 

This study aimed firstly to explore the use of social media and of apps by people with rheumatoid arthritis. Secondly to determine whether current technologies are used to manage health and wellbeing, as relatively little is known about patients’ perspectives and motives for social media usage in this chronic condition. 

3.       Materials and Methods 

3.1.  Study Design 

A qualitative exploration was implemented using semi-structured, face-to-face and telephone interviews with people with RA. A modified Interpretative Phenomenological Approach (IPA) was adopted, [22,23] allowing for a rigorous exploration of idiographic subjective experiences as applied to practice [24-27]. 

3.2.  Interview Schedule Development 

The draft interview schedule was developed following an Arthritis Research UK (ARUK) Stakeholders’ Education Day in which the researcher [SP] facilitated a group discussion entitled ‘Delivery of patient information in the 21^st Century: opportunities and challenges’. In that discussion, expert patients, consultant rheumatologists, podiatrists, specialist nurses, physiotherapists and members of the ARUK directorate covered topics including social media, education and patient experience. Field notes and a transcribed recording of the discussion were utilised to inform the interview schedule. In line with methods adopted by Turner and Coyle [28], findings from our review of the literature surrounding social media and RA were also employed to inform the interview schedule. The key areas for exploration included: perception and experience of rheumatoid arthritis, use of social media, and the role of software applications in disease self-management. 

A draft schedule was distributed amongst the research team and amended prior to the pilot study, then piloted in two telephone interviews to ensure face and content validity. Following these pilot interviews, it was further refined by including additional questions and prompts. These modifications were made in an attempt to capture a complete illustration of the disease and its impact on the lives of the respondents, from diagnosis to the present day. The initial interview schedule formed the basis for conversation, with minimal additional prompts [22]. It was used to facilitate the gathering of verbatim participant accounts; a central premise of IPA [23]. Open-ended questions were posed to allow for the introduction of new topics [29] and to ensure that participants’ observations on the subject were not restricted. 

3.3.  Subjects and setting 

The University of Brighton granted ethical approval. A purposive sample of people with RA, aged over 18, with a positive diagnosis of RA and an existing interest in, or knowledge of, social media were invited to participate via email, tweet and Facebook post from the National Rheumatoid Arthritis Society (NRAS) and Arthritis Research UK (ARUK). Those interested opted to participate and information about the study were emailed in order to gain informed consent. Interviews (either face-to-face or telephone) used the same interview schedule by one researcher (SP), throughout (Table 1).

Interview Schedule

3.4.  Data Analysis 

Each interview was audio taped and transcribed verbatim independently, pseudonyms were applied to maintain anonymity [30]. Data were firstly analysed using NVivo (v11) and indexed according to nodes and clusters [31]. Secondly, close reading and re-reading of the transcripts ensured familiarity with the text [22,32]. Preliminary themes were identified, followed by groups of themes and clusters. Themes were selected based on their prevalence within the transcripts. Similarities, differences, articulacy and eloquence of the participants in their explanations were noted in an attempt to reduce bias when selecting themes [33,34]. Collating the data from both analyses (NVivo and close reading) resulted in the final themes [33]. A final re-reading of the original transcripts was made to ensure that interpretations were grounded in the participants’ narratives [35]. Once the themes were formulated, these were checked by one of the research team [SO] to ensure the credibility and trustworthiness of the data [36,37]. The use of verbatim quotes is central to IPA [28] and exemplars have been included (using pseudonyms) to articulate each theme [29].

4.       Results 

Of the 25 people recruited, 14 participated (8 telephone interviews, 6 face-to-face interviews). All participants were female (mean age 38.5 (SD 9.9)), and mean disease duration was 12.2 (SD 15.9) years. The demographic data is detailed in (Table 2).

In total, four major themes were identified, which are described in detail below and illustrated with verbatim interview extracts. 

4.1.  Arthritis and Life 

The core theme, ‘Arthritis and life’, characterised powerful, expressive speech that demonstrated how participants’ lives were now unrecognisable. 

“I’m scared that I might die young because of my illness, I can’t lead a happy lifestyle, I don’t want this [Rheumatoid Arthritis] controlling my life. I control it, it don’t control me.” (Rita, 26). 

Prior to diagnosis, most participants were employed, with active social and family lives. Their RA caused tremendous disruption that required physical, psychological, social and emotional adaptations, which impacted significantly on everyday life. 

“I’ve become more introverted and that’s simply because I’ve felt so unhappy.” (Rosalie, 41) 

“I feel like it [RA] has ruined my life” (Renee, 34) 

“It [RA] has destroyed me, I am just so angry with it, because I am a young girl.” (Rita, 26) Importantly, it was reported that everyday routines had to be altered to cope with the challenges of incorporating medication regimes and coping with sife-effects. Additionally, considerable effort was required to adapt working lives to fit in a variety of routine appointments: 

“It’s like having another career just to keep the disease on maintenance level it’s a lot of upkeep that people don’t realise or appreciate. I’m forever having to manage my work life around it.” (Ruth, 33). 

“It’s just frustrating because I was such a busy person and I was doing so much voluntary and working for other people and now it’s role reversal people want to help me” (Riley, 28). 

The profound disruption to the lives of these women highlighted their need to identify new methods of support. They reported that social media often filled this role as the use of Facebook or Twitter enabled contact with people with similar experiences in a much wider geographical area. 

“Online I can talk to people all over the world and get their experiences and feedback and also get their support. Even if I just tweet ‘I’m having a rubbish day, something hurts’, it’s nice to get messages back from other people, ‘I know how you feel’ and I certainly wouldn’t have that if I didn’t have Twitter and Facebook.” (Rachel, 29) 

“I use Facebook just to keep in contact with people round the world. I have recently joined the National Rheumatoid Association Forum, which has been helpful, it’s lovely having their advice and input on what I should be doing to look after myself.” (Riley, 28). 

4.2.  Finding Support 

The concept of ‘finding support’ was important to all, with a strong consensus about the lack of available literature, when they needed it. This was particularly so for family and friends who needed to understand a disease that is not always clearly visible. Without information the onus was on participants themselves to educate friends and family. Participants expressed a need for further information about their disease, treatments and management so that they could take ownership and maintain a significant level of independence. 

“There isn’t enough information around, especially for people that don’t have arthritis.” (Reese, 26), “I found it incredibly hard to find information that my husband or close friends can read” (Rosemary, 41). 

It was frequently necessary, particularly for younger subjects, to talk about the effects of their often invisible disease, in order to counter the feeling of being a burden “It’s obviously been quite difficult for my husband to get to grips with, ”why can’t you manage things?” Because it’s all quite invisible at times” (Rosemary, 41). 

Respondents turned to various modes of communication (including friends, online support groups and social media) to find the required information. 

“I’ve enjoyed having social media, having interaction with other people who have the same disease as me, probably more so because of my age” (Rachel, 29).

“Especially if I’m having a bad day, a really bad day, I tend to go on there [Twitter] and catch up with a few people, and then I think, ‘oh actually it’s not so bad” (Rosemary, 44).

“I’ve been blogging about my condition, I find that really therapeutic” (Renee, 34).

The use of social media for support was described and presented a paradox between anonymity and familiarity. Some social media platforms permitted users to maintain a level of anonymity whilst connecting with familiar users and topics as a support mechanism. For example, ‘PatientsLikeMe’ permits users to maintain their anonymity, whereas with ‘Facebook’ and ‘Twitter’, identity is more visible. Apps were frequently mentioned as mechanisms for connecting with a range of social media. Online communication itself proved to be a useful way to avoid isolation. Indeed, respondents who had used social media in this way did not necessarily realise that they needed support until it was there.

 “I needed more support and I wanted people to talk to, so I found that’s how I found NRAS really” (Rebecca, 46).

“I wanted to be connected because I’ve never really been, I’ve never met anyone in my situation before” (Ruth, 33). 

Some respondents reported turning to social media specifically for information on support, but in doing so found that social media was itself a support tool. 

“I often found it [online communication] a good way of supporting myself when I was feeling a bit lonely and in a lot of pain” (Rebecca, 46)..

“I definitely get support and information back from it [Social Media]” (Ruth, 33). 

4.3.  Disease Management

The issues around initial diagnosis, on-going medication reviews and disease monitoring were identified as areas that played a major role in participants’ lives. For most, their RA diagnosis was life-changing and many reported taking several types of medication in numerous combinations. Consequently, they had devised meticulous recording systems for their medication regime. 

“I do it [Record Medication Data] in 17 different places, and like reminders on the calendar to put my prescription in or reminders on somewhere else to have the appointment or whatever. If it was all in one place it wouldn’t take very long for me to get used to doing it all in one place” (Rachel, 29). 

In addition, participants reported remembering and noting side effects, and mentioned the importance of attending regular blood tests and review appointments. Taken together, this was both frustrating and time consuming. One respondent summed up the impact this had on psychosocial wellbeing and everyday existence. 

 “I want to be in control, desperate to be in control” (Rosetta, 55). 

While routine blood tests, reviews and follow-up appointments interfered with the ‘normality’ that once existed, participants expressed a desire to take ownership of their disease and greater responsibility for disease management. This, they felt, would give them greater control of their everyday lives. Respondents were desperate to take control of their own disease. If they could not control its course, at least they could manage it by taking ownership. The provision of software which would give structure and help with organisation was seen to be a core method of improving control. The respondents positively described the benefits this could provide for them if it were made available via mobile device in the form of an app. 

“One place [referring to an app] where I could go and it would tell me where my hospital visits and my blood appointments and all that sort of thing were without having to take all the paperwork” (Rosanna, 51).

“It would be really nice to have some kind of app to keep my blood results” (Ruth, 33). 

“Having everything inside of one app social networks somewhere where you can log your medical monitoring, blood lab results, I think that would be really beneficial” (Renee, 34). 

Recording their symptoms on a disease timeline, using cumbersome hard copy media such as diaries and calendars, or computer spread-sheets and online calendars (or a mixture of both) enabled the development of a sense of ownership and a coping mechanism for some, and more widely reflected respondents’ desire to take control of their disease. If this process could be digitised to work on mobile technologies such as tablets or smart phones, participants could identify clear benefits: 

“If you’ve got an app you do things with it, but by the time you get to the consultant, if you’re waiting six months you know, you think oh there’s no point filling in three months ago, or you’ve forgotten about it. Whereas if you’ve got your phone you always have that with you and you could just click on it” (Roxanne, 53). 

4.4.  The Role of Social Media 

Respondents reflected on their disease, its diagnosis and how they had used social media to aid them through this life-changing event, particularly where cessation of activities or sporting hobbies after diagnosis had negatively affected self-reported quality-of-life. 

“I did feel quite isolated, I must admit, because obviously all my friends and most of my family were at work during the day and I started to get quite low and feel quite isolated. So I must admit my use of Facebook increased and that’s actually when I went onto Twitter. I tend to use Twitter more for having other people that have got things with a rheumatology interest or conditions, so that’s definitely much more on Twitter. Facebook tends to be my sort of family and friends” (Rosemary, 41). 

The use of social media also enabled exploration of new hobbies. For example, one respondent reported that she had replaced her favourite sporting activities with non-active ones, making more use of social media: for example, online blogging and photograph sharing. Regular use of specific social media (blogs, Facebook, Twitter, YouTube and health-related internet sites) also provided increased disease knowledge and enhanced coping mechanisms, which provided support and helped participants to avoid isolation, thus facilitating disease ownership. 

“I found when I first got diagnosed that I was whinging a lot on Facebook, because I was in so much pain” (Ruby, 41). 

“Twitter that was the main reason I went on there because I knew there was somebody on there that knew how I felt and felt that I could talk to them as much as I’ve got good support from my family and friends, I don’t feel they completely understand” (Rosemary, 41). 

“The majority of the time I use Facebook especially when you’re a bit down it’s nice to just have a rant, rather than take it out on my husband” (Roseanna, 51). 

The immediacy of information and support provided by social media and the ability to follow others with rheumatic disease, gaining information, explaining the disease to others and feeling informed about novel therapies, were all identified as invaluable. 

For some respondents, apps were helpful in their everyday lives, for example, easing activities such as ensuring a taxi is outside when it is difficult to stand/walk. Others were utilising apps to monitor their disease - for example photography apps to record their swollen joints to present to their health professionals at their next appointment. Respondents were eager to share ideas about how apps could be better employed to further develop monitoring, management and disease ownership. 

“I think for me to have my own information stored would be amazing, I would love that, if say blood results could be pinged over to the hospital and they could say ‘Ok this doesn’t look good, you should come in’, that can speed things up...information could be transmitted between me and the doctors, it would ease communication” (Ruth, 33). 

“I think it [an app] would be a really big help a feature where you could log in all the medications you take...and if you need to take them at set times, you could have reminders so that you don’t forget. You could have all your contact numbers on there for people, like your consultant’s details, GP’s details just in case you’re out and about” (Reese, 26). 

Some core features for any potential app (for example, storage of test results, medication data and disease information) seemed relevant to all.

“If it was all stored in an app, all my drugs and which I had and what I was allowed and how many of them I needed and I could automatically request a repeat prescription to be submitted” (Rachel, 29). 

Participants emphasised that an app that facilitates coping and disease management may also permit a level of normality. Using an app to manage disease so that it would fit into everyday life by reducing the focus upon it, and thereby allowing a greater level of normality, was a popular concept. 

5.       Discussion 

Social media has tremendous potential as a source of support for people with RA, and to the best of our knowledge, this is the first study to explore how they currently make use of it. The detailed narratives revealed participants’ personal in-depth thoughts, feelings, experiences and requirements relating to social media and uncover its use as a coping mechanism and means of taking disease ownership. This study suggests that, for people with RA, social media usage is already beneficial. The development of more specific software to aid their disease management would be valuable, particularly if this were available on mobile devices. Respondents were already using apps to manage other everyday tasks, such as online banking, and this behaviour could be replicated with patient-centred disease management in mind. 

Across the four key themes there was an over-arching theme of disease ownership. Improvements in self-management [6,30] has been reported to be proportional to improved patient outcomes [38]. Our respondents reported social media was being used for support and self-management; to improve perceived self-efficacy, promote independence and to develop and maintain social relationships. In line with previous work [8,17,39], participants detailed the advantages of social media (availability and accessibility), which afford flexibility, control and ownership over when, where, if and how they interact [39]. Portable devices are highly valued by individuals, and are commonly used - especially by women [40-42]. These devices tend to be permanently switched on and remain with the owner throughout the day, offering the opportunity to make real-time interventions. Our respondents felt that linking their disease information to existing social media platforms would be helpful. While some sites purport to offer this facility [43], not all features desired by participants are available. While high quality information is provided by some websites [44,45]. Such information tends to be generic, whereas social media has the ability to offer real-time personal support from users. 

Work by Azevedo, et al. [46] reported an inability to fully engage in self-management behaviours after diagnosis, due to either a lack of awareness of the importance of self-management, or a lack of knowledge about what to do. In evaluating the usefulness of a hypothetical smartphone app to support RA self-management [46], 86% of participants agreed it would be useful to develop a similar app and 94% believed it could facilitate a more active role in self-management. Our participants displayed a sound knowledge of positive self-management behaviours, but were overwhelmed by the existing online and print resources typically  available at diagnosis. 

Ensuring the credibility and reliability of information provided within apps, security and privacy issues, standardisation and potential conflicts of interest would all need to be considered if a specific app were to be developed [6,8,17]. The integration of apps with other aspects of patient care, including the use of electronic health records and patient portals, would be a pivotal step in advancing mobile health, but legitimate concerns about privacy would need particular attention. 

Patrick, et al. [39] report that apps aimed at improving health tend to provide information, advice, instruction/prompts, support, and encouragement as well as interactive tools for individuals to monitor and record symptoms. In other health fields parallels exist in the concept surrounding self-management. The Diabetes UK tracker app [19] provides users with a quick and simple, effective method of managing their diabetes 

The UK National Rheumatoid Arthritis Society have an app for tracking Disease activity scores [20] and a symptom tracking app exists in the US [21]. Interestingly, our participants listed characteristics for their own ideal hypothetical app (Table 3), which were above and beyond straightforward tracking of symptoms. ‘Treat-to-Target initiatives [47] and the need to fund expensive biologic mediciation, mean that there is a requirement to focus on disease activity scores and quantitative measures to push the patient through the treatment flowchart. This tends to lead to less focus on a holistic and individualised consideration of the nature of a persons’ arthritis. Many of the features in which our participants expressed an interest take advantage of diverse technologies that provide and maximise user-friendly visual graphics and speech animations to suit a variety of needs. 

Our findings were supported by Hootman, et al. [48] who suggested that, because of the hand pain/deformity experienced by some with RA, using newer touch-screen technology is a simpler method of navigating health resources. Despite the positivity surrounding health-related apps, there are important considerations associated with security, linguistic barriers and low levels of health e-literacy. Nevertheless, disease management apps have the potential to aid patients’ disease ownership and self-management and, if permitted, provide information for friends, family and clinicians. 

The strengths of this work are a patient-centred and patient-derived exploration that offers a richer understanding of the daily struggles of those with RA and the opportunity technology offers to make improvements in patients’ lives. Equally, this work is subject to limitations. The interviewer was female, and the sample was all-female with an interest in health-related apps. While using a single gender population may raise questions about the generalisability of the work, RA predominantly affects the female population [49]. Gender is an important consideration in conducting interviews [50] and in this case it is possible this may have led to greater disclosure. However, bias may be unwittingly introduced by a single interviewer and a reflexive approach to the analysis was employed to mitigate this possibility. The study participants were already active in online communities, thus the findings may not be fully generalisable, although the authors recognise the rise in social media usage across all communities. The use of a modified IPA approach allowed for the data to be interpreted on several levels [51]. A mix of telephone and face-to-face interviews was conducted and potential differences introduced by this approach are acknowledged [52]. Detailed socio-economic data were not collected, and it is recognised that low income may affect access to mobile devices [53], is not thought to have prevented interviewees from participating in the discussion surrounding social media and apps usage per se. 

In conclusion, social media appears particularly useful for people with RA. However, current apps to aid management of RA do not appear to fully meet patient needs. The development of a disease-specific app to track symptoms, store that information for future appointments [54], act as a resource for education, and importantly flexibility to link to existing social media platforms would be valued as part of a more patient-centred approach to clinical management. 

6.       Acknowledgements 

We thank Arthritis Research UK and the National Rheumatoid Arthritis Society for assisting with recruitment and our participants for their time. 

7.       Financial Support: We thank the Worshipful Company of Curriers of the City of London for funding the study. 

8.       Conflict of Interest: None

Table 1: Interview Schedule.

(Table 1) Appendix-1: Interview Schedule.

Table 2: Demographic details of participants.

Table 3: Characteristics a disease management app should ideally contain.

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