Patient Experiences and Strategies for Coping with SLE: A Qualitative Study

Abstract

Objective

This study explored challenges that patients with systemic lupus erythematosus (SLE) and childhood-onset SLE (cSLE) face to identify modifiable influences and coping strategies in patient experiences.

Methods

Participants were recruited from two academic medical centers through a Lupus Registry of individuals ≥18 years old and ≥4 1997 ACR classification criteria for SLE and a centralized data repository of cSLE patients, and participated in three focus groups. Transcripts were coded thematically and adjudicated by two independent reviewers.

Results

Thirteen adults, 7 (54%) with cSLE, participated in focus groups. Themes were categorized into two domains: (1) challenges with SLE diagnosis and management; and (2) patient coping strategies and modifiable factors of the SLE experience. Participants identified five primary challenges: diagnostic odyssey, public versus private face of SLE, SLE-related stresses, medication adherence, and transitioning from pediatric to adult care. Coping strategies and modifiable factors included social support, open communication about SLE, and strong patient-provider relationships. Several participants highlighted positive lessons learned through their experiences with SLE, including empathy, resilience, and self-care skills.

Conclusions

Patients with cSLE and SLE identified common challenges, modifying influences and coping strategies based on personal experiences. A strong patient-provider relationship and trust in the medical team emerged as key modifiable factors. Deriving optimism from experiences with SLE was unique to several patients diagnosed as children or young adults. Leveraging factors that improved the participants’ experiences living with SLE may be used in future studies to address vulnerabilities in care.

Introduction

Systemic lupus erythematosus (SLE) is a chronic, multi-system disease that poses complex management challenges for patients and their care teams. Patients can experience a broad range of manifestations and fluctuations in disease activity, including changes in external appearance, physical function, and cognitive and psychological symptoms. Diagnosing the disease can be difficult, in part due to this heterogeneity, with diagnosis occurring one year after symptom onset in around 40% of patients ¹. Patients who develop lupus before age 18 years (childhood-onset SLE, or cSLE) account for 10–20% of SLE patients and face further challenges, including more severe disease compared to adult SLE patients ^{2, 3} and ultimately obstacles that arise from the transition from pediatric to adult care ⁴. Treatment regimens are complicated by balancing adverse effects and polypharmacy, leading to problems with adherence in as many as a third of patients⁵. This wide array of issues highlights the need to understand patient perceptions of the illness experience and coping strategies, in hopes of giving both patients and providers better tools to improve care.

Previous qualitative studies have described patients’ perspectives on the impact SLE has on their lives and their preferences around medical care ⁶. This study builds on previous literature by including adult patients with both adult-onset SLE and cSLE in order to capture a wide range of experiences. The study aims were to explore the illness experience broadly and to qualitatively assess patient-identified influences and strategies to improve the care experience in SLE, including use of technology. Additionally, we focused on two common challenges, medication adherence and the transition experience for patients with SLE diagnosed in childhood or young adulthood, where recognizing modifiable factors could lead to significant improvements in care and outcomes.

Methods

Participant Recruitment:

Participants were recruited from two large academic medical centers, Brigham and Women’s Hospital (BWH) and Boston Children’s Hospital (BCH). Patients at BWH were identified through a registry of individuals ≥ 18 years who met four or more 1997 ACR classification criteria for SLE. At BCH, cSLE patients were identified within a centralized data repository if they were ≥18 years old and had ≥3 outpatient clinic visits with ≥1 diagnostic code for SLE. cSLE was defined as having a diagnosis of SLE made prior to a patient’s 18^th birthday. We required that all patients speak English to participate in a focus group. Flyers were mailed to SLE patients at both BCH and BWH and were posted in the pediatric and adult ambulatory rheumatology practices, and rheumatologists were asked to refer potentially interested patients. This study was approved by the BWH and BCH Institutional Review Boards.

Focus Groups:

Prior to the focus groups, we developed a moderator guide (Appendix 1) addressing topics determined from prior literature reviews including psychosocial aspects of care, medication use, pediatric to adult transition and the doctor-patient relationship. We introduced these topics using four vignettes to facilitate discussion.

A trained moderator (CS) led three focus groups held between January 2017 and July 2018, lasting approximately 90 minutes each. Two of the focus groups were held at BCH and one was held at BWH. We asked participants to provide sociodemographic characteristics, as well as age at diagnosis of SLE. Focus groups were audio-recorded. Rheumatologists (CHF and MBS) left the room during discussions about relationships with provider, so as to not influence responses. Participants received lunch, a parking voucher, and a $20 gift card.

Analysis:

Focus group recordings were de-identified and transcribed verbatim. Detailed field notes were used to supplement transcripts. Using phenomenological interpretive analysis ⁷, a pediatric (MBS) and an adult (CF) rheumatologist reviewed transcripts and agreed upon preliminary codes. MBS and CHF jointly reviewed and coded the longest transcript, and discrepancies were adjudicated and used to inform coding of the other two transcripts. Codes were clustered into themes and sub-themes. MBS and CHF re-reviewed transcripts to refine themes, which were subsequently reviewed by a 5-person study team to adjudicate discrepancies and choose key quotes. We used qualitative software (Dedoose^™, 8.3) for coding and thematic analysis ⁸.

Results

Thirteen individuals with SLE participated in three focus groups (Table 1): one group with four participants, one with six, and one with three. The mean age at participation in the focus group was 35 years (range 18–66). There was one male participant (7%). Five participants identified as White, five Black, two Asian, and one Hispanic. Seven participants (54%) had cSLE, and the mean age at diagnosis among the 12 participants who reported this information was 20 years (range 11–46). Two participants with cSLE were still receiving care through pediatric rheumatology, and two were in the process of transitioning to adult care. Three participants with cSLE and SLE diagnosed in young adulthood had transitioned from pediatric to adult care already and an additional participant was diagnosed at her college health center before coming to adult care. Participants are identified by focus group number (1,2,3), a randomly assigned letter, and whether they have SLE or cSLE.

Table 1:

Sociodemographic Characteristics of the Subjects Participating in Three Focus Groups (N=13)

Participant	cSLE or SLE	Age at Diagnosis	Age at Focus Group
1A	SLE	19	28
1B	cSLE	17	25
1C	cSLE	15.5*	21
1D	cSLE	15.5*	22
2E	SLE	NR**	58
2F	SLE	18	26
2G	SLE	46	66
2H	SLE	39	60
2I	cSLE	15	41
2J	SLE	20	43
3K	cSLE	13	18
3L	cSLE	12	23
3M	cSLE	11	20
Mean (range)		20 (11–46)	35 (18–66)

^*Participants wrote age at diagnosis of 15–16 years

^**Not reported

We identified overarching themes and key quotes. We then categorized the themes into two domains: (1) challenges with SLE diagnosis and management (Table 2) and (2) patient coping strategies and modifiable factors of the SLE experience (Table 3).

Table 2:

Challenges in SLE and selected quotes

Description	Selected Quotes (Participant)
I. Diagnostic Odyssey
a. Discrepancy between what patients feel and what physicians see	I started getting that and severe joint pain, couldn’t even stand up by myself and things like that. I would tell my mom and my brother about it. They’re like, “No, it’s whatever. You’re fine.” I’m like, “No, I know my body, this is something completely different.” (1D, cSLE)
b. Trauma, isolation around first diagnosis	I wasn’t diagnosed until I was 21 after I had a stillborn child. That’s when I was diagnosed. From there, I was just with them tellin’ me I had lupus, and I was in scare mode. I was like, “I’m scared. If I try for another child, will my child be born as a stillborn just as well?” I was just livin’ in fear ever since I lost my first child. (2J, SLE)
II. Public vs. Private Face of SLE
a. Physical manifestations	…Family members give something or family wants to take pictures, it’s, “Oh, I don’t wanna.” You know what I mean? I don’t wanna take pictures too much, go out, and things like that because someone’s always askin’ you a question. (2J, SLE)
b. Difference between the way a person looks versus feels	When I tell them that I don’t do certain things because of this and this and this, they will tell me, “Well you’re overacting or you’re pretending,” which has happened before. (1A, SLE)
c. Shame at diagnosis	I don’t really tell all of my friends. I was actually ashamed to tell anyone at first when I was diagnosed. That was one of the reasons why I didn’t take my pills too, because I didn’t like taking pills in front of people, because I was ashamed of lupus. (3L, cSLE)
d. Impact of the disease on life and identity	I kept the lupus hidden for a long time or as long as I could because I didn’t wanna be thought of the lupus girl. (2F, SLE)
III. Medication Adherence
a. Side effects	I think side effects are a big issue with medicine. Especially with the prednisone. It makes your face big and stuff like that. Even when I first got it, that was one of the hills… I didn’t really wanna take cuz it affected my appearance, and high school, kids, one of them things, so there was issues with that. (1C, cSLE)
b. Influence of routine/routine changes on adherence	I kind of have a routine of what I do at night and in the morning. If something breaks that routine, that’s what makes me miss my medication, especially, I’ll visit my sister who lives in [town] or I’ll visit my parents… That just totally messes up my routine. That’s the number one time I most likely miss my medication. (1B, cSLE)
c. Unintentional nonadherence	So sometimes if I’m busy one day and I just forget. If I forget one dose, I just start forgetting it for a couple of days. (3L, cSLE)
d. Gaps between knowing and doing	Patients lie, and I think most patients overestimate when they answer to their doctor, ‘Have you been taking your medication?” “Yeah.” “What percent?” “Like half the time,” when it’s not true. I do that…sometimes, too, and I catch myself. (2F, SLE)
IV. Transition from Pediatric to Adult Care
a. Coordination and logistics	I still have problems transferring over all of my records. … It’s been a huge problem because I had so many doctors, and so I think they transfer some of it….That’s been really difficult cuz I can explain my history as best I can, but it might not have the information that they want. (1B, cSLE)
b. Environment	I know it doesn’t seem like a big deal, but [the pediatric hospital] has pretty murals and staircases that you can run up and it makes noise. That makes me really happy. Then you go to [the adult hospital] and it’s like grey and tan. Every waiting room looks the same. That has been really tough for me, cuz it’s like your environment affects your mood. (1B, cSLE)
c. Relationship with first rheumatologist	It’s really all about the connection with your doctor. … I think it’s just the relationship that you have with your doctor and then they haven’t known you for such a long time. Having to switch to a new doctor who doesn’t necessarily know you or know your medical record, but know you as a person. (1D, cSLE)
d. Provider to Provider Communication	Just like the doctor that I trust now informing the doctor that I’m supposed to trust later. (1C, cSLE)
e. Patient responsibility	…I’m also very frustrated with—at this point in my life, there’s so many things where I’m still one foot in the adult world and one foot in the adolescent world. Where I’m just like, “Let me just move on already.” It’s just frustrating. (1D, cSLE)
V. SLE-Related Stress
a. Bi-directional relationship between stress and SLE	I think stress on your body, physiologically, cuz of the lupus and then just stress from whatever it might be on the outside, like friends or work or any type of outside really has—I know, for me, has such a drastic effect [on disease activity] – and not eating right or that circular thing when you don’t feel well, and then you get more stressed cuz you’re not doin’ what you’re supposed to. (2E, SLE)
b. Role of stress in disease flares	It wasn’t conscious, then every time that I was getting more stressed or I was getting my car broken or I got after rejection, I felt everywhere. All my organs were shaking inside me, and I didn’t know why. No medication would help me… Yes, stress is something that can just make things worse for me. It is the only thing that is. (1A, SLE)

Table 3:

Modifiable Influences and selected quotes

Description	Selected Quotes (Participant)
Modifiable Influences
VI. Patient-Provider Relationship
a. Patient and provider communication and trust	I think it might be hard to stay motivated to take your prescription every day if you have a doctor you don’t trust because then you might question whether or not they have your best interest in mind, or you may think that they’re not aware of what the side effects are or compromises you need to make in order to keep taking this particular prescription. I think the doctor-patient relationship’s very important. (2H, SLE)
b. Physician characteristics	She’s just very good at—yeah, keeping calm and being very real with you about what you’re not doing right and how that can affect you and what you need to be working on. Being very empathetic. (1D, cSLE)
c. Relationship with first rheumatologist	She was the first doctor who when I—when she walked me through it I felt like, oh, things are gonna be okay… Yeah, cuz she was the first rheumatologist I had, so I wanted to keep her forever. (1B, cSLE)
d. Role of research	Every time I go in she tells me what she’s doing, what studies she’s in, what studies I’m in with her. …I don’t understand most of it, but she’s telling me what she’s doing and she’s telling me how it will affect me and my future and I really like that. (3K, cSLE)
VII. Social Support
a. Role of family	I think my family has been real good about it and they just know—can kinda predict ahead what situations will bother me, so they try to help me with that. My brother was moving, my job was to watch the truck, so I didn’t actually move anything. My mom is really supportive about taking me to doctor’s appointments. She worries so much, so it can be—I know having lupus is hard, but sometimes I have to tell her, “You gotta keep it together.” (1B, cSLE)
b. Role of social networks/support groups	I did a focus group before, so I think just to have a space to talk and listen from other people, hear other people, you might pick up new ways to deal with things…. Then you just see like, “My gosh, she says, she doesn’t know anybody else who has lupus.” …she goes through the same thing as me. You get a sense of you’re not alone. (1C, cSLE)
c. Role of friends	Then I have the church. My church friends, which are wonderful—whenever I do go into the hospital or get sick, they come and visit me. They come and help me out. (2G, SLE)
VIIII. Communication and Awareness about SLE
a. Sharing as empowerment	I do things to empower. When I find people who have it, I like to talk to them, see what kind of things they do…. I try to spread awareness when I can…. I got a whole bunch of posts about it on social media, or the lupus awareness month. I do the walks and stuff like that. Yeah, I don’t hide it. I just try to make it aware, cuz not a lotta people know about it. (1C, cSLE)
b. Deepening friendships	I had to tell my roommates about it, and that was a really difficult conversation. That was the first time I told anyone outside of my family that I had lupus. After we breached that barrier, they shared with me who they have family members who have similar chronic illnesses. Yeah, it was surprisingly not as bad as I feared. I think, because we shared that with each other, we’re a lot closer than we have ever been. (2F, SLE)
Patient-Directed Strategies
IX. Focusing on Positive Side of SLE
a. Learning self-care and empathy	I’m starting to think about my health when I was 18 as opposed to years later. Also, the job I have requires a lot of empathy, and I don’t—I think I was empathetic before, but I think it’s made me a lot better person. (1B, cSLE)
b. Cultivating gratitude	[My mom] told me to start a gratitude journal, which is so cheesy, but it worked…. the attitude of gratitude was very helpful for me because I felt like I had lost so much and that I didn’t have anything or I didn’t have friends, I didn’t have family. … I think gratitude and then just understanding what self-care means to me. (2F, SLE)
c. Re-evaluating priorities	…Before being diagnosed I was this super achiever, workaholic, fun. One of the people that wanted to do something—achieve something fast just because they can. Lupus changed me completely. I found meaning in other things, in small things and small things in my life. (1A, SLE)
X. Reducing Stress
a. Strategies used for coping/stress reduction (e.g. yoga, exercise)	Just taking the time to really enjoy those moments where you’re supposed to be relaxing and not stressing about—if you have work to do during the week, and you have the weekend. Enjoy the weekend, and don’t think about what you have to do for the coming week, cuz just—it’s never going to help you. (1D, cSLE)
b. Being protected by caretakers	To be honest, one of the reasons that I think I recovered fast is because I kind of behaved like a child. I was treated like child, being taken care of like child. I was like watching cartoon all the time, was laughing a lot. My part of my psychology at the early stages of recovering helped me a lot to just be healthy faster than normal. (1A, SLE)
XI. Technology
a. Content with current system	Yeah. No, I have my own system, like a pharmacist would set up a system. That’s what I do for myself, so it works. (2E, SLE)
b. Saturation with technology	I think it’s hard to get the …younger generation to adopt another app because, even though we are so phone addicted, I think we’re phone saturated. (2F, SLE)
c. Importance of human connection	An app can just feel like another chore, like calorie counting. I tried doing that for a bit. That’s so annoying, or that’s so boring to do, to put in your numbers and then, what, there’s no feedback? I think having a human component behind the app, even if it’s virtual is very important. (2F, SLE)

Challenges Identified:

Participants identified five primary challenges in their experiences of lupus: diagnostic odyssey, public versus private face of SLE (discrepancy between the internal experience and external appearance), SLE-related stresses, medication adherence, and transitioning from pediatric to adult care (Table 2).

Challenges: Diagnostic Odyssey

Participants with cSLE and those with SLE discussed challenges during their journeys from the onset of symptoms to their ultimate diagnosis of SLE. Several expressed frustration about the discrepancy between what they felt and what others saw or understood, such as doctors and family members. After receiving their diagnosis, several participants also noted a sense of isolation and experience of trauma, as well as a fear for future consequences. One participant described:

“I wasn’t diagnosed until I was 21 after I had a stillborn child. That’s when I was diagnosed. From there, I was just with them tellin’ me I had lupus, and I was in scare mode. I was like, ‘I’m scared. If I try for another child, will my child be born as a stillborn just as well?’ I was just livin’ in fear ever since I lost my first child.”

(2J, SLE).

Challenges: Public versus Private Face of Lupus:

Participants, both those with cSLE and those with SLE, described the complicated feelings around lupus as part of their identity, including disfiguring physical manifestations (Table 2, theme II, quote a) and a sense of shame (Table 2, theme II, quote c). Such feelings affected their willingness to do certain activities or be in public. Some also noted the opposite problem, when they were symptomatic but did not externally appear sick to others (Table 2, theme II, quote b). Some participants voiced concerns around accepting SLE as part of one’s identity, losing a sense of normalcy, and choosing how to share that aspect of their identity with others. As one participant shared:

“I kept the lupus hidden for a long time or as long as I could because I didn’t wanna be thought of the lupus girl.”

(2F, SLE)

Challenges: Medication Adherence

Multiple participants both with SLE and cSLE cited difficulties with medication side effects, particularly the impact of steroids on their physical appearance (Table 2, theme III, quote a). Other common issues were the logistics around taking medications, disruptions in one’s routine, and unintentional non-adherence or forgetfulness. As one participant described:

“I kind of have a routine of what I do at night and in the morning. If something breaks that routine, that’s what makes me miss my medication, especially, I’ll visit my sister who lives in [town] or I’ll visit my parents in [town]. … That’s the number one time I most likely miss my medication.”

(1B, cSLE)

Challenges: Transition from Pediatric to Adult Care

The anticipated or completed process of transitioning from pediatric to adult care posed a unique challenge for participants with cSLE. Several cited difficulty with logistics, for example with medical records (Table 2, theme IV, quote a). Differences in environment (Table 2, theme IV, quote b), as well as a strong bond to their first rheumatologist, also played roles in willingness to transition to adult care. A participant with cSLE noted:

“It’s really all about the connection with your doctor. Cuz yeah, switching your medical records and things like that is—there’s the whole logistics of it. I think it’s just the relationship that you have with your doctor and then they haven’t known you for such a long time. Having to switch to a new doctor who doesn’t necessarily know you or know your medical record, but know you as a person.”

(1D, cSLE)

Multiple participants expressed the desire for a handoff between their providers that was tailored for each individual patient, and meeting in person if possible (Table 2, theme IV, quote d).

Challenges: SLE-Related Stress

Participants with SLE and cSLE described a bidirectional relationship between SLE and stress, with each negatively impacting the other. They felt that stresses outside of SLE caused disease flares, and that SLE also caused stress.

“I think stress on your body, physiologically, cuz of the lupus and then just stress from whatever it might be on the outside, like friends or work or any type of outside really has—I know, for me, has such a drastic effect [on disease activity] – and not eating right or that circular thing when you don’t feel well, and then you get more stressed cuz you’re not doin’ what you’re supposed to.”

(2E, SLE)

Modifiable Factors and Patient Strategies:

Participants also offered specific strategies to address challenges, such as reducing stress and increasing sleep (Table 3). They identified modifiable factors in managing SLE and transitioning from pediatric to adult care including social support, open communication about SLE, and strong patient-provider relationships.

Modifiable Factors: Patient-Provider Relationship

Just as patient-provider relationships were noted in the challenge around transition of care, patients with SLE and cSLE both discussed the importance of two-way patient-provider communication and trust. One participant stated:

“I think it might be hard to stay motivated to take your prescription every day if you have a doctor you don’t trust because then you might question whether or not they have your best interest in mind, or you may think that they’re not aware of what the side effects are or compromises you need to make in order to keep taking this particular prescription. I think the doctor-patient relationship’s very important.”

(2H, SLE)

Certain provider characteristics, like being “personable,” a good listener, and “calm” were especially helpful (Table 2, theme VI, quote b). Patients also noted the role of their first rheumatologist, whether they were diagnosed in childhood or in adulthood. Finally, several participants shared that they valued having a provider who was involved with research (Table 2, theme VI, quote d).

Modifiable Factors: Social Support

Participants mentioned the importance of drawing on social support from family and friends, while also noting that these relationships could be a source of stress. For family, a patient with cSLE described:

“I think my family has been real good about it and they just know—can kinda predict ahead what situations will bother me, so they try to help me with that. My brother was moving, my job was to watch the truck, so I didn’t actually move anything. My mom is really supportive about taking me to doctor’s appointments. She worries so much, so it can be—I know having lupus is hard, but sometimes I have to tell her, ‘You gotta keep it together.’”

(1B, cSLE).

Connecting with other people who have SLE was another area of interest for participants, including focus groups and virtual platforms (Table 2, theme VII, quote b).

Modifiable Factors: Communication and Awareness about SLE

Related to the challenge of the public and private face of lupus, participants described the balance involved in choosing how and what to share about SLE, as well as their personal experiences. Communication about lupus with friends could be a source of tension, but also deeper relationships for some. As one participant stated:

“I had to tell my roommates about it, and that was a really difficult conversation. That was the first time I told anyone outside of my family that I had lupus. After we breached that barrier, they shared with me who they have family members who have similar chronic illnesses. Yeah, it was surprisingly not as bad as I feared. I think, because we shared that with each other, we’re a lot closer than we have ever been.”

(2F, SLE)

Patient Strategies: Focusing on Positive Side of SLE

Several participants with cSLE as well as SLE patients diagnosed in early adulthood highlighted positive lessons learned through their experiences with SLE that taught them coping strategies, including empathy, resilience, re-organization of priorities, cultivation of gratitude, and self-care skills. For instance, one participant noted:

“I’m starting to think about my health when I was 18 as opposed to years later. Also, the job I have requires a lot of empathy, and I don’t—I think I was empathetic before, but I think it’s made me a lot better person.”

(1B, cSLE)

Finally, another participant diagnosed at age 21 shared:

“It’s something I didn’t pay attention to when I was—before being diagnosed. Because before being diagnosed I was this super achiever, workaholic, fun. One of the people that wanted to do something—achieve something fast just because they can. Lupus changed me completely. I found meaning in other things, in small things and small things in my life.”

(1A, SLE).

Patient Strategies: Reducing Stress

Participants described many ways to reduce stress in their lives, including getting more sleep, exercising, and consciously choosing priorities in their life. One participant described:

“Just taking the time to really enjoy those moments where you’re supposed to be relaxing and not stressing about—if you have work to do during the week, and you have the weekend. Enjoy the weekend, and don’t think about what you have to do for the coming week, cuz just—it’s never going to help you.”

(1D, cSLE)

Patient Strategies: Using Technology

Participants were asked to discuss whether or not they engage with technology (e.g. mobile apps) in the management of their SLE or their medications. Several participants cited existing phone apps, such as their calendars and alarms, as useful reminders, and a reluctance to change their existing system.

“Yeah. No, I have my own system, like a pharmacist would set up a system. That’s what I do for myself, so it works.” (2E, SLE)

Participants also noted that there could be drawbacks to too much technology, and the importance of building in a social component:

“I think it’s hard to get the …younger generation to adopt another app because, even though we are so phone addicted, I think we’re phone saturated… an app can just feel like another chore, like calorie counting. I tried doing that for a bit. That’s so annoying, or that’s so boring to do, to put in your numbers and then, what, there’s no feedback? I think having a human component behind the app, even if it’s virtual is very important.”

(2F, SLE)

Finally, one participant with cSLE had connected with other people with SLE over Instagram. Social media was not raised as a discussion point in the other focus groups.

Discussion

In this qualitative study of patients with SLE and cSLE, focus group participants explored common challenges in their care, including medication adherence and transitioning to adult care, as well as modifying influences and strategies to improve their illness experience. A trusting patient-provider relationship emerged as a key modifiable factor. Several patients with cSLE, as well as adults diagnosed at younger ages, noted optimism associated with their SLE diagnosis, describing their disease experience as helping them focus on self-care and increase their empathy and gratitude.

The patient-provider relationship has been described as a key factor influencing SLE care in prior studies ⁶. A single-center questionnaire study of patients with SLE nephritis in the United Kingdom noted that better patient-doctor relationships predicted good medication adherence; conversely, lower trust was associated with greater risk of anxiety and depression ⁹. Patient communication has also been linked to morbidity, as shown in a study by Ward et al describing a lower rate of permanent organ damage in patients with SLE who asked more questions, were more assertive, and who expressed more concern during their visits ¹⁰. Communication and provider trust is especially important for patients with cSLE who are transitioning between medical teams. Patients in transition from pediatric to adult providers are a vulnerable group, with high rates of disease activity during the transition period ^{11, 12}, and yet gaps in care with an average wait time of 9 months between the last pediatric and first adult appointments in one cohort study of cSLE ¹¹. Accordingly, guidelines for the transition of patients with cSLE call for a focus on clear communication to help adult rheumatologists engage effectively with their new patients, as well as regular bi-directional communication between the adult and pediatric rheumatologists ¹³. Our study suggests that patients recognize the centrality of the patient-provider relationship in their care, and that this could be a key component of interventions to improve transition between providers and medication adherence.

cSLE patients and younger patients with adult SLE interpreted some of their SLE experience as positive. While this study did not compare and contrast perspectives of patients with cSLE and SLE a priori given the small sample size, the expression of optimism among those diagnosed at a younger age emerged as a unique finding in the qualitative analysis. Optimism in the setting of SLE has been described previously ⁶. Focus groups of patients with cSLE in Australia noted that their illness experiences helped them develop self-reliance and meet new challenges in their care ¹⁴. Another set of focus groups of patients with cSLE and childhood-onset mixed connective tissue disease described a positive illness identity in the majority of patients, with the quarter of patients with a negative identity being older, having worse health outcomes, and noting challenges and transitioning to adult care ¹⁵. Patients with adult-onset SLE have also described optimism and resilience built through their illness experience, including a Swedish study noting increases in humility, gratefulness, and empathy ¹⁶, and a study from the United Kingdom noting a positive effect on friendships ¹⁷. Finally, there is emerging data about the long-term impact of optimism on health outcomes. Data from the Nurses’ Health Study has suggested higher all-cause mortality for women falling into the lowest quartile of optimism when compared to the highest quartile ¹⁸. Likewise, optimism has been linked to having lower rates of tobacco use and healthier diets and body mass indices ¹⁹. Therefore, promoting an optimistic approach to care is an opportunity for the health care team to impact both the patient experience and health outcomes.

Our study found that participants were hesitant to embrace additional technology to facilitate their experience with SLE. We had hypothesized that the younger generation would be eager to engage with technology-based solutions, but were surprised at reluctance to do so in both patients with cSLE and SLE. The ubiquity of apps and technology in general and in healthcare may have already saturated patients’ interest. This contrasts with a prior qualitative study in 2013 of teenagers and young adults with various rheumatologic conditions, which found that patients were eager to engage with text messaging for appointment reminders and online health management programs ²⁰. The discrepancy could reflect advances in technology, since patients at the adult hospital in our study could already receive text message reminders for appointments, and both groups had access to an online portal to see their medical records and communicate with their medical teams. Additionally, participants may struggle to envision the utility of new technology-based tools, but could benefit from them in practice. Finally, we did not specifically ask about social media or social components of technology to manage disease. A pilot program for adolescents with SLE found that those who were offered a social media component with online educational modules were more likely to improve medication adherence ²¹. Social media may therefore be an important avenue to address the need for a “human component” of self-management technology noted in these focus groups.

This was a qualitative study intended to explore patient experiences with SLE and cSLE. Limitations include having few male participants and recruitment being limited to two medical practices in one urban area. Although the small size of the focus groups allowed for a deeper exploration into the issues discussed and facilitated participation of all members, the overall sample is small, and difficulty with recruitment precluded holding additional focus groups. We did not examine how proximity to transitioning from pediatric to adult might have impacted patient perspectives on the process, but this could provide further insights in future studies. Potential biases include non-response bias in recruitment, and confirmation bias in the group setting. Strengths include addressing a wide range of topics with a group of patients with diverse backgrounds in terms of racial and ethnic background, age of diagnosis, and stage in the process of transition from pediatric to adult care. While our sample size was too small to allow for meaningful comparison of themes across these groups, this would be an interesting area for future research.

In conclusion, this group of patients with cSLE and SLE identified multiple challenges in their care, as well as modifiable influences and patient-directed strategies to help improve their care experiences. This highlights the importance of using a comprehensive care model that leverages the strength of the patient-provider relationship and factors supporting a positive patient outlook should be considered in future interventions.