‘Information is power’: A qualitative exploration of co-producing education resources about cardiovascular disease in partnership with women living with lupus

Abstract

Background:

Systemic lupus erythematosus (SLE) is a chronic autoimmune condition impacting 1 in 2000 people. As 90% of SLE patients are women, and racialized populations experience significantly poorer outcomes, we characterize SLE as gendered, racialized, invisible and episodic. Further compounding these inequities is an elevated risk of cardiovascular disease (CVD) among this population. Crucially, there is a dearth of research evidence as well as public knowledge pertaining to its aetiology and manifestations in women. Indeed, CVD is a primary driver of morbidity and mortality in SLE. Despite calls for improved screening and awareness among this high-risk population, there is a lack of risk prediction tools and patient education resources specific to SLE.

Objectives:

The objectives of this study were to co-create a lay language patient education resource in partnership with SLE knowledge users, as well as to obtain recommendations on the development of an associated future CVD risk prediction tool designed specifically for this population.

Design/Methods:

Semi-structured in-depth interviews and a focus group were conducted with women who are SLE patients (n = 5) and key informants (n = 5), respectively. An integrated knowledge translation approach included a transdisciplinary team of researchers and a patient partner throughout the research process.

Results:

Participants were knowledgeable about SLE but less informed about the risks of CVD. Few recalled discussing CVD with physician(s), but most were aware of differences in symptoms among men and women. Participants responded positively to the education resource and provided recommendations to improve accessibility, inclusivity and impact for the target audience. Participants agreed that they would use the future SLE-CALCULATOR tool and advised on its design and usability.

Conclusions:

These results underscore CVD as an urgent women’s health issue and highlight the need for inclusive patient education about the risks of CVD in SLE. The resource discussed herein begins to fill that gap.

Plain language summary

‘Information is power’: Creating education resources about cardiovascular disease in partnership with the lupus community

Systemic lupus erythematosus (also known as SLE, or lupus) is a chronic disease affecting 1 in 2000 people globally. 90% of people with SLE are women, and individuals representing racialized minorities – including Black and Indigenous groups – experience more severe disease. Illness or death due to cardiovascular disease (CVD) (also known as heart disease and/or stroke) is common in SLE. However, it is difficult to predict risk of CVD in people with SLE as current tools are developed for the general population and do not take into account the impacts of SLE on the body. This study asked participants with SLE experience for their ideas and recommendations on a document designed to educate people about the risks of CVD in SLE. The research team included scientists with a range of expertise related to SLE and a patient partner who lives with SLE. Participants were knowledgeable about SLE, but not CVD, despite many having experienced hospitalization or treatment related to CVD. All participants felt that the resource provided them with essential information regarding their health, and provided suggestions to make it more accessible and inclusive for people living with SLE. Participants agreed that a future SLE-CALCULATOR would also be useful, and provided advice on designing such a tool. Our results demonstrate that there is an urgent need for people living with SLE to be informed about the risks of CVD. This resource, and a future SLE-CALCULATOR tool, will begin to fill these gaps in SLE care.

Introduction

Systemic lupus erythematosus (SLE) is a chronic autoimmune condition affecting 1 in 2000 North Americans, ¹ and at least 3.41 million people globally. ² In SLE, one’s own immune cells and autoantibodies attack normally healthy organs and tissues, resulting in symptoms such as extreme fatigue, muscle and joint pain, kidney issues, and skin rash, including a characteristic butterfly-shaped rash on the face. ³ In addition to these physical impacts, people living with SLE also experience psychosocial impacts (e.g. worry, fear, anxiety), ⁴ mental health impacts (e.g. depression, cognitive issues),^5,6 and financial impacts (e.g. cost of treatments, time lost from work), ⁷ among others, due to their illness.

SLE also exhibits striking social disparities; 90% of patients are female, ⁸ and SLE is a leading cause of death for women between 5 and 64 years of age. ⁹ Racialized populations such as Black, Indigenous, Hispanic and Asian groups are significantly overrepresented^{10 –12} and consistently experience worse health outcomes than their white counterparts.^13,14 Low socioeconomic status and having fewer years of education have consistently been associated with increased disease damage and poorer overall survival.^15,16 In line with other chronic, invisible and episodic illnesses, ¹⁷ women with SLE often report healthcare experiences that are perceived to be influenced by their gender and/or race,^18,19 resulting in their symptoms were dismissed or treated inadequately. Applying an intersectional lens, it is evident that SLE is an urgent women’s health issue globally, with particular significance for already marginalized populations.

While medical interventions for SLE have patients living longer, on average, compared to previous decades, co-morbidities with other infectious and chronic conditions have become an increasing concern. ²⁰ Indeed, one of the primary drivers of SLE-related morbidity and mortality is cardiovascular disease (CVD). ²¹ Evidence indicates that patients with SLE are more than twice as likely to experience cardiac events such as myocardial infarction and stroke. ²² While traditional risk factors such as age, smoking, and obesity have been shown to be important in the development of CVD for individuals with SLE, this population also faces additional risks due to ongoing inflammation, immune dysregulation, and prolonged treatment with corticosteroids. ²³ SLE disease activity and associated tissue damage have also been strongly implicated in atherosclerotic processes. ²⁴

While there have been calls for improved screening and detection practices among this group, current risk prediction models do not account for SLE-specific factors, and thus perform poorly in this context. ²⁵ Importantly, much of the CVD literature to date has focused primarily on men,^26,27 while the majority of patients with SLE are women. Emerging research demonstrates that CVD manifests much differently in women, presenting with different symptoms, and some female-specific risk factors related to hormonal conditions and pregnancy are left unaccounted for.^28,29 Though women are more likely to adopt preventative behaviours, they less frequently receive healthcare follow-up, cardiac investigation and treatment. ³⁰ Recognizing these inequities, the American Heart Association issued a global call to action to reduce the risks and burden of CVD in women through collective education, advocacy, optimized clinical care and community engagement. ³¹

Given the existing gendered, racialized and other social disparities in SLE epidemiology and outcomes, the additional risks of CVD function synergistically to position this already high-risk population as particularly vulnerable. Despite these critical risks, patients report receiving little information about SLE, its associated impacts and management strategies upon diagnosis. Studies have shown that this significant information gap leads to feelings of overwhelm, confusion and stress, ³² which have been directly associated with disease flares requiring hospitalization, ³³ and forces patients to turn to alternate sources for health information. ³⁴ Indeed, an international survey of people living with SLE showed that while physicians were the most trusted and preferred sources of health information, they were accessed the least frequently; news and social media were accessed the most frequently, with 17.2% of respondents suffering negative impacts from the inaccurate information they received from these sources.^34,35 This case study of SLE is in line with a disturbing trend of rapidly proliferating health misinformation on social media surrounding women’s health issues more broadly,^{36 –38} which has subsequently been termed the ‘truth gap’. ³⁹ Taken together, this further underscores gendered inequities in health and illuminates an urgent need for trusted patient education resources.

To this end, our research team sought to co-develop a patient education resource designed specifically for the SLE community using an integrated knowledge translation (iKT) approach. The aims of this resource were to increase knowledge and awareness around the risks of CVD for patients with SLE, and to promote empowerment and behaviour change around prevention and management strategies. In line with iKT approaches to research, we sought input and feedback from knowledge users at all stages of the research process to ensure that the research deliverables were useful, useable and meaningful.^40,41 The specific objective of this study was to obtain knowledge user feedback on the patient education resource and the potential for a novel risk monitoring tool, with the ultimate goal of incorporating this feedback into the final version of these deliverables for dissemination.

Methods

One focus group (n = 5) and in-depth interviews (n = 5) were conducted to obtain knowledge user input, feedback and recommendations on the patient education resource and a future risk monitoring tool. This study was approved by the University of Waterloo Office of Research Ethics (ORE#44339) and is reported in line with COREQ (Supplemental Material) guidelines. ⁴²

Integrated knowledge translation

In line with our iKT approach, we leveraged an existing transdisciplinary ⁴³ research team comprised of one clinician-scientist (MYC), one senior researcher (SJE), one doctoral student (ES), a research assistant (KB) and a patient partner (CS) with lived experience with SLE who is trained in research. The research team met virtually on a bi-weekly basis for peer debriefing, to discuss project updates, and review emerging results. All were involved throughout the research process and provided recommendations at key stages.

Patient education resource

To educate patients with SLE about the risks of CVD, the research team collaboratively developed a patient education resource. Based on the existing literature, and anticipated knowledge user needs, an outline for the resource was developed. The literature surrounding SLE and CVD was reviewed and synthesized, and key messages were prioritized for inclusion in the document. Professional graphic design services were contracted to design the document and graphics. The research team reviewed the initial draft and provided feedback. Team recommendations were used to revise the resource prior to the study.

Topics covered in the document include what is CVD, why those with SLE are at higher risk, who within the population is most at risk, and prevention/management strategies to reduce risk. The document is written in plain language for a general audience (i.e. eighth grade reading level) ⁴⁴ and includes links to additional evidence-based resources for more information.

SLE-CALCULATOR tool

The SLE-CALCULATOR (Systemic Lupus Erythematosus CArdiovascuLar Disease Event Risk PrediCtion Using Machine LeArning Techniques and NOvel ThRombotic Autoantibodies) is a tool under development for predicting risk of CVD in individuals with SLE. In contrast to risk prediction tools for the general population, the SLE-CALCULATOR uses machine learning techniques to incorporate traditional CVD risk factors, SLE-specific variables, and novel autoantibodies into a single algorithm. ⁴⁵ This tool is currently being developed by collaborators, and when validated, will be publicly available online, free of charge, for use by individuals with SLE, their physicians and/or other healthcare professionals.

While a detailed methodology describing the SLE-CALCULATOR development process is outside the scope of this study and will be described elsewhere, ⁴⁵ the research herein contributes to the knowledge translation aims of this project by engaging knowledge users to assist in co-producing the vision for this future tool.

Focus group

A focus group-style webinar was held online via Zoom with key informants. Key informants were purposively sampled, with the inclusion criteria that they had specific expertise (either specialized knowledge or lived experience) in either SLE or CVD (e.g. advocacy organizations, physicians, researchers). There were no exclusion criteria. Some invited participants were known to the research team through previous research participation and/or collaboration, while others did not have previous existing relationships with the research team. After initial contact with prospective participants, snowball sampling was implemented to allow key informants to invite additional members of their organizations. Selected key informants were invited by email. Interested participants were provided with a copy of the patient education resource to review before the meeting. Two participants agreed to participate but did not attend the meeting; a number of others did not respond to invitation.

A semi-structured facilitator guide and meeting agenda were developed with open-ended questions and probes to stimulate discussion around four main themes: (i) experiences of SLE, (ii) knowledge and experiences about CVD in SLE, (iii) the lay document and (iv) the SLE-CALCULATOR. All materials were reviewed in full by the research team, including our patient partner, who provided input and feedback. The facilitator guide was piloted ahead of the meeting to ensure all questions were understandable and solicited discussion around anticipated topics.

The focus group was 90 min in length and was conducted by ES, a female PhD candidate with prior experience in qualitative data collection and analysis. The meeting was structured with a 30-min presentation followed by 60 min of discussion. The presentation portion provided an overview of the research team, the purpose and objectives of the research, and the research deliverables to be discussed (i.e. lay document and SLE-CALCULATOR). The discussion portion was facilitated according to the facilitator guide and agenda. During discussion about the lay document, the lay document was able to be viewed by all participants using the screen share feature. All research team members attended the session to observe and add to the discussion where necessary. The meeting was audio and video recorded, transcribed verbatim, and proofread for qualitative analysis.

In-depth interviews

One-on-one, semi-structured in-depth interviews were conducted by ES online via Zoom with patients with SLE. Interviews were held with patients rather than a focus group as we recognized that our participants may experience intermittent illness that could impact their abilities to fully participate. Interviews provided more flexibility for patients to participate when they felt well, reschedule if they felt unwell, and join remotely (e.g. from home or work, or while caring for children). As many patients with SLE prefer not to disclose their illness, interviews also provided privacy and anonymity. ⁷ The inclusion criteria for interviews required that all patients were adults >18 years of age who had previously received a diagnosis of SLE and were currently receiving treatment or follow-up. Participants who did not (yet) have a rheumatologist diagnosis of SLE were excluded. Patients were recruited from MYC’s clinical rheumatology practice in Calgary, Alberta. Interested participants were provided with a copy of the patient education resource to review before the meeting. Protocols and materials used for the focus groups were amended for use in a one-on-one interview setting but were otherwise prepared in the same manner as described above. There was an attrition of three participants during the consent process; one participant did not respond to invitation.

Interviews ranged from 28 to 53 min in length. The interview structure was modelled based on the focus group (described above), but compacted, with 15 min for presentation and 45 min for discussion as the one-on-one interview setting allowed for a more individualized approach. Interviews were audio and video recorded, transcribed verbatim, and proofread for qualitative analysis. Transcripts were not provided for comment by participants, and no repeat interviews were carried out, but participants were invited to provide any additional statements or input via email.

Qualitative analysis

Transcripts from the focus group and interviews were analysed thematically using NVIVO software. ES coded the data with input from the research team, as described below. The coding tree had five top-level nodes (identities, SLE, CVD, knowledge of SLE/CVD, patient education resource, SLE-CALCULATOR) with two additional levels of sub-nodes to identify major and minor themes. Unique codes were assigned to all nodes to collect relevant sections of text corresponding to each theme and to determine their relative frequencies within the transcripts. Codes were developed deductively (e.g. codes determined based on prior literature searching and possible responses to questions) and inductively (e.g. emerged from the data during analysis). Inductive codes were developed as transcripts were continuously read and reviewed throughout the analysis process. When themes emerged that were not in the codebook, they were added and data was iteratively reviewed for relevant text. Coded sections of text were reviewed within the context of each code to ensure consistent interpretation of the text across transcripts and throughout the analysis process.

Rigour

A number of strategies were employed to establish rigour in the research design. During recruitment, purposive sampling was used to intentionally seek out research participants rich in contextual knowledge and experiences in order to optimize the data collected. For example, key informants were intentionally recruited who would have strong connections with the SLE community (e.g. representatives of advocacy organizations) or experience with patient education (e.g. other health-related organizations and clinicians). Moreover, we sought out maximum variation within the participant groups (e.g. education/training, experience, identities) to integrate multiple perspectives, increase chances to collect contradictory evidence, ⁴⁶ and construct a more holistic and representative view of SLE experiences. ⁴⁶

During the data collection process, member checking was employed throughout interviews and the focus group. This technique entails summarizing and reiterating the content provided by participants when discussing interview questions and asking them to confirm the researcher’s interpretation, thereby minimizing miscommunications and ensuring accurate representation of results. ⁴⁷ Efforts were made to build rapport and trust with participants at all stages of contact, through scheduling through to interview follow-up, in order to ensure participants were comfortable and reduce any perceived power imbalances. Throughout the data collection process, peer review and peer debriefing were utilized regularly by discussing emerging results and interpretation with the research team. Interviews were conducted to a point of saturation, at which no new themes were emerging. ⁴⁶ Researcher notes were taken during the recruitment process as well as during and immediately after interviews and the focus groups to document and reflect on interactions with participants.

Qualitative data sources were triangulated during analysis and interpretation to confirm validity and construct a more complete picture of the research findings. ⁴⁸ Specifically, methodological triangulation was done through the use of different qualitative methods (e.g. focus groups and interviews), data triangulation was achieved through the use of multiple participant groups (e.g. key informants and patients with SLE), and investigator triangulation was found through collaboration with the research team. ⁴⁹

Results

Participants

Key informants who participated in the focus groups encapsulated a number of roles, identities and experiences related to SLE and CVD. Of the five participants, three were representatives from SLE advocacy organizations; these participants were also SLE patients in addition to their key informant roles supporting the broader SLE community. One participant represented a CVD-related advocacy organization. Two were researchers; one in the area of SLE and one in clinical studies. One participant was a physician working in haematology practice.

The five patients who participated in interviews described experiences spanning mild, moderate and severe SLE disease. Two self-identified as people of colour, and one patient was also an MD, although they practised outside the scope of SLE.

Knowledge and experiences of CVD

Most of the participants who were living with SLE were knowledgeable about the disease and open about its impacts on their lives. While many recounted the many physical challenges of SLE (5/5 interviews; 3/5 FG), some also relayed impacts related to mental/psychosocial health (3/5 interviews; 1/5 FG), careers and employment (2/5 interviews), and family and relationships (1/5 interviews). Many participants highlighted their experiences in relation to others’, emphasizing the high variability in SLE symptoms and severity.

When prompted about their knowledge of CVD, many of the participants who were not health researchers or practitioners were considerably less confident. While roughly half of the interview participants (3/5) identified the heart, lungs and blood vessels as the major organs involved, most spoke to the importance of a healthy lifestyle (4/5) in preventing CVD.

Across both the interview and focus groups, CVD-related conditions were commonly recounted. The most frequently mentioned were heart attack and stroke, but there was some confusion about what constitutes CVD outside of these two clinical manifestations. As one participant discussed:

‘I talked about this with my friend the other day, she has a pacemaker. So, does she have cardiovascular disease? I had stents put in in, a couple years ago, right? So, do I have? But it’s better now, I don’t have anything. But do you still have cardiovascular disease? That’s the question. Kind of like, well, you have the pacemaker because you had cardiovascular disease. And I had a stent put in because I had cardiovascular disease. But it seems to like, cover, like, anything from a stroke to a heart attack to clogged arteries to, you know, a weak heart. It’s kind of, like, but if somebody had asked me, you know, maybe six months ago, I would say no, I don’t have cardiovascular disease. But I do. Right? If I’ve had stents put in, I’m assuming that I have cardiovascular disease. But it’s one of those things, like, it’s, like some people have it and are fine, and some people find out about it the hard way, right? So, yeah, that’s another kind of, it encompasses a lot.’ – Participant 2, SLE patient

Indeed, several participants had previous lived experiences with CVD that they related to throughout the discussion. A total of 5 participants (2/5 interviews; 3/5 FG) had experienced one or more of stroke (n = 1), heart attack (n = 1), bypass surgery (n = 1), deep vein thrombosis (n = 1), issues with blood clotting (n = 1) or pericarditis (n = 1). Notably, all of the participants who had experienced CVD events also had SLE. Similarly, all of the participants with SLE also described themselves as being at high risk for CVD, but this was rarely attributed to SLE (n = 1); other reasons for identifying as high risk included a family history of CVD (two interviews; one FG), previous CVD events (two interviews; one FG), or high blood pressure (two interviews; two FG). Despite the knowledge that they were considered high risk, participants had little clarity about what the interaction of multiple risk factors meant for them, and how this impacted their overall health.

‘I know I am probably at higher risk than others. . . However, having said that, I don’t know specifically how much of a risk I’m at.’ – Participant 5, SLE patient

‘In my case, I knew I was at higher risk of cardiovascular disease both because of my family history and because of lupus, but I didn’t know how much higher risk. Because I was coming across different figures and, something said twofold and you know, you’re getting all different information about how much risk is involved.’ – Participant 6, Key informant

Although nearly all of the participants living with SLE had either identified themselves at high risk for CVD or had had a previous CVD event, only three participants recalled discussing information about CVD risk or prevention with one or more of their physicians. Seven of the participants did not recall discussing this with one or more physicians (some mentioned experiences with more than one physician, e.g. family doctor or rheumatologist). One participant reflected:

‘I also think the rheumatologists need to keep a closer eye on this and educate their patients. Like, when they’re first diagnosed, say okay, because you have lupus you have to be really careful of this, this and this, because you are more likely to have cardiovascular disease. At least mine, there was no prophylactic advice for avoiding a stroke. . . it’s got to start at the very beginnings so that patients know right away the types of things that might happen because of lupus. You know, in addition to the typical lupus symptoms.’ – Participant 6, Key informant

Interestingly, when describing their experiences with CVD, several participants raised challenges around sex-based differences in CVD symptoms, perhaps reflecting current public health discourse. ³¹

‘Especially in women, we don’t present with the. . . big pain in the chest and down the arms. . . which actually complicates it even more. Lupus and we’re women so, you know, it makes it harder.’ – Participant 7, Key informant

Another participant expressed some confusion around the symptoms of CVD in women, and how this might influence gendered behaviours around seeking (or not seeking) care:

‘What am I looking for? Like, am I looking for heartburn? Am I looking for like, neck pain? Am I looking for like, shortness of breath? Chest pain? Like, there’s so many, and especially women, we seem not to take our heart disease as serious as men do. . . you know what I mean? . . .I’ve got indigestion, I’ve got heartburn, take a Tums. Right? But I know that’s, like, I was suffering heartburn a lot. And I know that’s a sign. But not everybody does. . . I think maybe a lot of people don’t know or don’t pay attention to the, the signs.’ – Participant 2, SLE patient

Three participants recalled doing their own research on CVD, citing advocacy organizations (e.g. Lupus Canada or Heart & Stroke Foundation) and webpages affiliated with hospitals or clinics (e.g. Johns Hopkins or Mayo Clinic) as primary sources for ‘reputable’ information. Most of the participants who had not independently researched the topic stated that it simply wasn’t ‘top of mind’. However, some participants enacted ‘not knowing’ as a coping mechanism to protect their mental and emotional wellbeing:

‘Sometimes you do want to know what could happen and sometimes you don’t want to know what could happen. Right? So, I think if I, if my condition changed or my symptoms were more severe, then maybe I’d look. . . I know this is a terrible thing to say, but sometimes ignorance is bliss. Right? Like if I don’t know what’s coming then I won’t, it’s kind of like a double-edged sword. Like, you want to know what can happen, but then you don’t want to, every time you get a twinge you don’t want to think, oh, that’s it.’ – Participant 2, SLE patient

‘I did look up what’s the evidence. And the more I read, the less I feel comfortable. . . I was like, oh my god, I don’t know if I should be reading all of these things, if I should just let it go. . . But every so often I just try to, you know, I try to read up and that just makes things worse, I feel like. I don’t know.’ – Participant 4, SLE patient

Patient education resource

Participants generally responded positively to the patient education resource, and many cited that they believed it filled a knowledge gap for not only patients with SLE but also physicians and family members. Participants stated that the text was clear and readable, the content was informative and organized, and that they felt the information was helpful and credible. They felt that the graphics were attractive and enhanced reading of the text, and that the length of the document was suitable for providing information while being ‘digestible’ and ‘not overwhelming’. One participant emphasized the importance of knowledge user feedback in ensuring that the resource was useful and meaningful:

‘I think it’s great you’re getting input from other patients. And I think that’s important. Because at the end of the day, hopefully they’re the ones that are going to be using it.’ – Participant 5, SLE patient

While participants were overwhelmingly supportive of the resource, they provided a number of suggestions to enhance its impact and usability. Drawing on their own experiences and knowledge gaps, participants identified a number of areas across the document that required additional explanation, or additional topics that should be addressed. For example, key informants widely agreed that more attention should be paid to brain involvement in CVD and outcomes such as stroke throughout the resource:

‘One thing is that when people talk about cardiovascular disease, medical professionals know that that includes strokes, so the brain is involved. So, some of the diagrams and even the content. . . doesn’t reflect the stroke risk as much. . . It’s the heart, blood vessels, but it also encompasses the brain.’ – Participant 6, Key informant

Other recommendations included the introduction of several additional risk factors: stress, sedentary lifestyle, vaping and cannabis. Focus group participants were in consensus that these were important risk factors in the current Canadian context, particularly for younger groups, who are often removed from conversations around CVD due to perceived lower risk.

In reviewing the resource, participants also provided important insights into how to tailor content towards those with SLE specifically, while also remaining inclusive to the diverse range of abilities and identities represented within the SLE community. A particular focus of this conversation was modifying language around prevention practices to remain inclusive of those experiencing physical symptoms (e.g. fatigue, pain, or varying energy levels). For example, when discussing exercise as a strategy to reduce CVD risk, one participant stated:

‘I’m wondering if the image is to show somebody lifting a weight? I think that’s important, but should it not be somebody walking for cardiac health? . . .something that’s realistic with lupus patients being able to do.’ – Participant 7, Key informant

Another added:

‘Quite often, lupus patients have some mobility issues and with their joints, so, I mean, a certain amount of weightlifting is good but, like you say, maybe the emphasis should be more on cardiovascular type of activity.’ – Participant 8, Key informant

Building on the principle of inclusivity, participants also suggested a number of avenues for enhancing the accessibility of the resource. One major suggestion was to release the document in different languages –both English and French, at minimum – but participants also identified that the online location of the resource might be a barrier to some:

‘I know some people don’t have access to the internet but for the most part, people are accessing information online. But even if they could have, like, a sheet of paper to, you know, have available. Or a brochure or something for even the patients. . . I think there should be two options. It should be in various places where they can access this information. Maybe could even work in conjunction with other organizations. . . as much as you can get it out there as possible.’ – Participant 5, SLE patient

Participants were also highly conscious of the emotional impacts of reviewing information about the potential dangers of CVD, both for themselves and for others.

‘It’s just not fair. People with lupus have a higher risk of like, things, like everything.’ – Participant 1, SLE patient

One participant highlighted that, because of these difficult emotions, the information presented should be as concise and easy to read as possible:

‘Well, if you have the disease and you’re looking at this, like, you’re probably going to feel a bit emotional. Maybe even overwhelmed. So, it’s like, as much as you can spoon-feed, I guess, is, is better.’ – Participant 3, SLE patient

On the other hand, several participants felt that ‘knowledge is power’, and that while this information might be challenging, it was an important tool in empowering themselves to take action for their own health:

‘If you can do anything to help your situation, I think that’s important. To have some control. Because I think with lupus, we often feel things are out of our control. So, if this is something that we could maybe do to help prevent potential problems, then I think information is power. If you have the information, it gives you more confidence. . . in managing your disease.’ – Participant 5, SLE patient

Indeed, many participants felt they obtained important takeaways from the resource, and that this was important information to share with the SLE community. Three interview patients were candid about having no previous knowledge of the interactions between CVD and SLE. As one patient shared:

‘I thought it was interesting. . . There was information in there I didn’t really know about despite having had this for 20 years now. . . I’ve had lupus for most of my life and I just haven’t come across this, like, CVD, at all. So, I think I can’t be the only one.’ – Participant 3, SLE patient

Risk monitoring tools

Participants who were living with SLE were universally interested in using a tool to calculate and monitor their CVD risk that was developed specific to SLE-related risk factors. Three patients with SLE indicated that they would also be interested in providing their doctor with such a tool.

When prompted about what type of online platform would be preferred for a risk monitoring tool, participants had divided opinions between a website (three interviews; two FG) or a mobile app (one interview; three FG). Reasons that a website was preferred were the convenience of visiting an Internet browser over downloading an app (n = 2), that a website would be easier to find (e.g. via Google search; n = 1) and more widely accessible (e.g. those without smartphones; n = 1), that the tool would not be used frequently (n = 1), and fear of computer viruses transmitted through apps (n = 1). Preferences for an app were due to privacy concerns (n = 1), less maintenance required (n = 2), the ability to store continuous data (n = 1), use apps more often (n = 2), and ease of transferring data to a physician (n = 1). Across both groups, ensuring both privacy of personal information (n = 4) and accessibility to a broad audience (n = 6) were significant concerns. Overall, most participants agreed that there were pros and cons to both platforms, and indicated that they would be open to using either or both.

Participants were asked what information or resources should accompany the tool to enhance its usefulness and usability. Most frequently mentioned were including information on prevention and steps to take to reduce risk (four interviews), a description of how user information would be kept private (one interview; three FG), and explanations of the risk scores (two interviews). Others requested detailed instructions for use (one interview), links to other resources (one interview), and a minimal design (one interview).

While online tools are frequently used in health, research suggests that they are not always widely trusted.^34,35 When asked what features would indicate that an online tool was trustworthy, participants cited an association with a hospital or university (three interviews; one FG), descriptive author information (e.g. who created the tool and what are their qualifications; n = 2 interviews; one FG), endorsement by their physician (three interviews), association with an advocacy group (one interview), academic references (one FG); and that there were no advertisements on the platform (one interview).

Overall, many participants felt that this type of tool was needed by the SLE population and would have significant impact. When prompted to share how knowing this risk score might impact their lifestyle choices, one participant shared:

‘I think if you see it there and you have some actual tangible numbers that you can look at. . . like if I was a little bit higher risk, I think you would have an incentive to say, well, there are some things I could do to manage that. I personally think I would use it. . . I think people do want to improve their health, for the most part. And if they’ve had some issues, you know, that have been, you know, an unpleasant experience, then I think you strive to do something to prevent that.’ – Participant 5, SLE patient

Another participant felt similarly, sharing that knowing their risk score would motivate them to create lifestyle and behaviour changes:

‘I think, maybe like a little shock and awe. Not shock and awe, but a little like, [gasps]. . . But with fairness, it might take, like, that’s what it may take, right? . . .Heart disease runs in my family. My dad and my grandpa both had it, you know? Or have it. But, I mean. . . I don’t need anything more to happen, you know?’ – Participant 1, SLE patient

Discussion

This study demonstrates that while patients with SLE generally have a high degree of knowledge about SLE, they have limited information about the associated risks of CVD. Even participants who had previously experienced a CVD event were not aware of the relationship between SLE and CVD, though they identified themselves as ‘high risk’ for other reasons. Most did not recall discussing this topic with their doctors, instead relying on independent Internet searches for information or otherwise making an intentional choice not to seek out additional information as a coping mechanism. These findings are in line with similar studies in the United States – as many as 58% of patients with SLE surveyed study had never received CVD-related counselling from a physician. ⁵⁰ Of a subset of patients who self-identified as high risk, only 57% received counselling. ⁵⁰ Our findings, taken together with the literature, highlight the urgent knowledge and care gaps among this population in Canada, and join previous calls for improved risk monitoring and patient education. ⁵¹

Therapeutic patient education (TPE), or the use of non-pharmacological educational initiatives to manage disease, has previously been successful across a number of contexts related to CVD ⁵² and has been increasingly called upon in the literature as a critical tool to address CVD disparities among women.^31,53 To this end, we sought to co-produce an educational resource along with knowledge users. The variety of knowledge users who participated in this study provided critical input; while the resource was generally received positively, and participants felt it was useful in raising awareness and promotion actionable prevention and management strategies, they offered recommendations for a number of areas where additional explanation was needed and/or additional topics should be addressed. In particular, knowledge users made significant contributions in making the content accessible and inclusive. In addition to voicing their own needs related to the resource, participants recognized and advocated for the SLE community as a diverse group with a range of disease impacts, (dis)abilities, interest levels, personal histories and experiences, identities, and healthcare access, and ensured that all aspects of the documents were as inclusive as possible. For example, participants recommended that advice for physical activity should include ways to exercise for those with lower energy or mobility levels (e.g. yoga or stretching), and be sensitive to the episodic nature of SLE symptoms (e.g. ‘listen to your body’).

In addition to the content, participants also identified novel audiences for the resource. While this was primarily intended by the research team to be for patients themselves, participants were enthusiastic about sharing this information with their families, caregivers and even their physicians, both to foster understanding about CVD, but also to raise awareness about SLE more broadly.

Knowledge users were unanimously interested in the idea of a novel risk monitoring tool developed specifically for those with SLE; however, they were equally divided between using an app or website to access such a tool. This result marked a significant shift for the research team, who had previously anticipated that users would prefer an app. Based on this feedback, a tool is currently under development housed by a website, with the potential to develop an app in the future. Knowledge user ideas about accompanying information and indicators of trustworthiness are also being taken into account during this process to increase uptake and usability.

Overall, these results are in line with findings from other studies leveraging iKT and knowledge user input to make research outputs more useful, useable and meaningful. Through engaging knowledge users, researchers are able to co-produce research deliverables specifically tailored to the unique needs of the intended audience. In this process, knowledge sharing is bidirectional; while researchers gain insight from knowledge users, participants were similarly gaining knowledge and learnings through engaging with the resource. Indeed, many remarked that they were going to revisit the document and some of the associated resources at the end of their session. In general, knowledge users from both groups were enthusiastic about engaging with research and offering their perspectives for the greater good of the community.

Study strengths

A considerable strength of this study is our iKT approach. While we engaged with a number of knowledge users, we also had a patient partner trained in research guiding this process as an equal member of the research team. Our qualitative approach also engendered feedback from a number of different knowledge user types, providing a number of perspectives. While key informants understood the Canadian SLE community broadly, patients were able to give specific feedback based on their unique experiences. We were also able to include physicians, who had medical expertise on the topic, and researchers who were experts in SLE to ensure that all information was evidence-informed and accurately presented.

Limitations

We recognize some limitations to our approach. Due to logistical constraints of recruiting participants from a clinical setting wherein multiple stages of ethical approval are required, we had a limited number of participants. Moreover, all of our patient participants were from the same geographical region, and therefore may not represent healthcare experiences from other Canadian contexts with differentially operating healthcare systems. Though we sought maximum variation from within the participant pool, we had limited representation of participants who were men, or self-identified as Indigenous or other racialized groups. Given that these populations face particular risk of both SLE and CVD, specific input from these individuals would have been particularly valuable. However, this is in line with issues in SLE research more broadly, where minority groups are less likely to participate in research due to structural barriers.^{54 –56}

Conclusions

Overall, this study has demonstrated how iKT approaches can be leveraged to co-produce effective and meaningful patient education resources in SLE. Through engaging a variety of knowledge users with a range of SLE and CVD experiences, this process helped to shape the content, inclusiveness and accessibility of the resource to best meet the needs of the target audience. Knowledge users also advised on best practices for dissemination of the resource through multiple modalities and identified a number of alternative populations who could benefit from the document’s messaging.

In tandem, our discussions with knowledge users demonstrated a critical need for educational resources in this space. While patients with SLE are at significantly high risk of CVD, many lacked specific knowledge about this risk; we anticipate that this resource will begin to fill that gap. However, it is clear that enhanced education and awareness around the risks of CVD in SLE are required not only for patients but also for physicians and other healthcare professionals to reduce morbidity and mortality for this vulnerable group.

Supplemental Material

sj-pdf-1-whe-10.1177_17455057251351736 – Supplemental material for ‘Information is power’: A qualitative exploration of co-producing education resources about cardiovascular disease in partnership with women living with lupus

Supplemental material, sj-pdf-1-whe-10.1177_17455057251351736 for ‘Information is power’: A qualitative exploration of co-producing education resources about cardiovascular disease in partnership with women living with lupus by Emily Shantz, Susan J. Elliott, Christine Sperling and May Y. Choi in Women’s Health