Abstract
Objective
Cognitive impairment (CI) in systemic lupus erythematosus (SLE) negatively impacts health‐related quality of life leading to activity limitations. This qualitative study aimed to (1) explore the effect of SLE‐related CI on activities of daily living and life role participation and (2) describe factors influencing activity restriction and life role participation.
Methods
Semistructured, in‐depth interviews of lived experience of CI in SLE were conducted with 24 participants with SLE. Sociodemographic and clinical data, and objective and subjective cognitive function, were collected to characterize participants. A qualitative thematic content analysis was undertaken guided by a framework analytical approach.
Results
Participants reported problems in multiple cognitive domains, with multiple perceived causes. CI was felt to impact work, social, domestic, and family life, health, and independence. Five overarching themes were represented in the data: (1) characterization of SLE‐reported CI, (2) perceived cause of CI, (3) perceived impact of CI on activities of daily living and life role participation, (4) adaptations for managing CI, and (5) influence of CI adaptations on activities of daily living and life role participation.
Conclusion
This study provides a better understanding of the patient experience of CI in SLE, how it impacts their lives, and what coping strategies they employ. It highlights the long‐term challenges those with CI in SLE undergo and provides evidence for the urgent need to implement multidisciplinary treatment options. When managing CI, it may be beneficial to evaluate and understand available psychosocial support resources to help identify and reinforce relevant adaptations to improve health‐related quality of life.
INTRODUCTION
Systemic lupus erythematosus (SLE) is a complex, multifaceted, autoimmune disease with signs and symptoms that fluctuate between flares, remission, and relapses throughout the patients’ lives from the moment of diagnosis. 1 , 2 Symptoms are very debilitating and can be both visible and invisible. 3 , 4 SLE is a disease that can affect every organ of the body,2 including the nervous system potentially leading to diagnosis of neuropsychiatric SLE (NPSLE). NPSLE encompasses 19 different syndromes, 5 including cognitive impairment (CI), which has a prevalence of 38%. 6
SIGNIFICANCE & INNOVATIONS.
When combined with other systemic lupus erythematosus (SLE) symptoms, SLE‐cognitive impairment (CI) may have its own unique implications on activity performance and life role participation.
Five key themes emerged from the research including the impact of CI on daily living and life role participation, adaptations for managing CI, and how these adaptions then influence daily living and life role participation.
Regardless of the type of CI, subjective or objective, the impact remained the same.
The study highlighted the long‐term challenges those with CI in SLE undergo and provides evidence for the urgent need to implement multidisciplinary treatment options.
CI can be defined by the American College of Rheumatology (ACR) nomenclature as “significant deficits in any or all the following main cognitive functions: memory (learning and recall), complex attention, simple attention, executive skills (planning, organizing, and sequencing), visual‐spatial processing, language, reasoning/problem solving, and psychomotor speed”. 5 This definition focuses on objective CI; however, subjective CI, often referred to as “brain fog,” is commonly reported in clinic by patients. 7 Limited associations between objective and subjective CI have been found and more research is needed to see if there are differences in how and why these CI “types” can impact quality of life.
The pathogenesis of CI in SLE remains unclear. It is known that the convergence of internal and external factors contribute to its presentation, including mood disorders, medications, circulating antibodies and cytokines, and disease severity. 8 CI can also result in loss of functionality, reduced autonomy, and disability, leading to loss of employment, changes within the support system, and stigma. 9 The unpredictability of SLE and the influence of neuropsychiatric symptoms can create uncertainty with long‐term disability and dependency on interpersonal relationships that can be associated with poor psychological and psychosocial functioning.
SLE has been shown to negatively affect many areas of social functioning and health‐related quality of life (HRQoL), including mobility, social recreation and leisure, domestic life, personal care, community life, and employment. 10 , 11 , 12 These difficulties are observed in a system and personal context as they manage the interaction between illness symptoms and altered social and personal routines. 13 Patients with SLE often make a choice between health and social well being to manage the demands of every day life. The exercising of choice can be greatly influenced by factors of temporality (eg, life stage at time of illness), cognitive function (eg, coping behaviors and mental flexibility), and the available interactions an individual has with their environment (eg, interpersonal relationships). 14 , 15 Work disability in patients with SLE has also been associated with neurocognitive involvement, increased psychosocial demands, and decreased personal control. 16 Therefore, understanding the impact of CI on psychosocial demands and personal control on activities of daily living and quality of life in SLE is paramount.
There is an increased research focus on HRQoL in SLE, but few have specifically looked at CI in SLE and HRQoL. Those that have reported that CI in SLE was associated with depressive symptoms and illness‐specific factors, including organ damage and high erythrocyte sedimentation. 17 Others have focused on patients’ with SLE characterization and identification of CI related to disease activity, broad functioning dimensions, and psychiatric comorbidities. 18 , 19 , 20 It has been suggested that CI in SLE is associated with decreased HRQoL and negative outcomes in disease self‐management.
However, there are limited qualitative studies that have examined the impact of SLE‐related CI on HRQoL, especially a paucity of studies about SLE‐CI from the perspective of those with lived experience, how it impacts daily life activity, and social role participation. When combined with other SLE symptoms, SLE‐CI may have its own unique implications on activity performance and life role participation, 12 , 21 , 22 as can be found with other non‐SLE populations who experience CI. 23 , 24 Therefore, the aims of this study were to (1) explore the impact of SLE‐related CI on activities of daily living and life role participation and (2) describe contextual factors influencing activity restriction and life role participation. These impacts and contextual factors were also evaluated in respect to CI type (subjective versus objective).
MATERIALS AND METHODS
Participants
Participants were recruited from a larger SLE‐CI study, conducted at the University of Toronto Lupus Clinic at the Toronto Western Hospital, using purposive sampling with consideration to age, sex, duration of SLE‐diagnosis, and indications of objective and/or subjective CI. 25 All participants met ACR revised criteria for the classification of SLE or three ACR criteria and a typical biopsy lesion of SLE, 4 , 26 , 27 were aged 18 to 65 years old, proficient in English, and physically and mentally fit enough to participate in the study. Participants provided written informed consent in accordance with the Helsinki Declaration and the study was reviewed and approved by the University Health Network Research Ethics Board (UHN REB #: 15‐9582‐BE, CAPCR ID: 20‐5193).
Participant characteristic data collected
Demographic and clinical data included age, sex, disease duration, disease activity and damage as measured by the SLE Disease Activity Index‐2000 28 and Systemic Lupus International Collaborating Clinics/ACR Damage Index, 29 respectively, and prednisone dose. Objective CI was measured using the modified ACR neuropsychological battery (ACR‐NB) as described elsewhere 30 and subjective CI using the Perceived Deficits Questionnaire (PDQ‐20). 31
Interview structure and analysis
Semi‐structured, in‐depth qualitative interviews were conducted to characterize SLE‐CI by examining its influence on activities of daily life and life role participation. Interviews were 60 minutes, conducted by trained researchers (MK, LE), and completed between October 2018 and March 2019. Interviews were digitally audio‐recorded and transcribed by the research team (MK, LE). The interview guide was developed to inductively pose questions related to life activity limitations, perceptions of quality of life, and social role participation restrictions faced by individuals living with SLE‐CI related experiences (see Supplementary Material). Follow‐up interviews were not conducted; however, participants were contacted to ensure data accuracy and integrity when verifying transcript content. Interview sample size was determined through thematic data saturation and when further interviews no longer contributed to development of a theme. 32
A combined approach using the framework analytical method and thematic analysis was used to interpret the data both inductively through personal accounts and experiences and deductively through existing qualitative research to develop themes. 33 , 34 , 35 Qualitative analysis was performed using NVivo 12 software. 36 The qualitative analysis included multiple methods to increase the trustworthiness and limit bias, including triangulation of coding perspective by multiple coders during analysis, reflective journaling to consider any biases that may influence data collection or analysis, and use of direct quotes to describe results. 37 , 38
Data familiarization with the interview transcripts and qualitative analysis was performed by three of the authors from different backgrounds: psychological, academic, and medical (AH, MB, AS). All generated work from these three coders was also independently reviewed by the other two coders. Independent, open coding of relevant descriptions and quotes of interest were organized inductively into descriptive themes to represent the data. Codes generated were focused on reviewing different perspectives to refer to values, behaviors, and emotions surrounding the interview questions posed. After coding the first six transcripts, research meetings were held to discuss organizing groupings of codes that represented a clearly defined idea to develop a working analytical framework. This working analytical framework was applied in reviewing the subsequent transcripts. Once all the transcripts were reviewed, the data were charted into a framework matrix to categorical review the data across four different subgroupings of SLE‐related CI: (1) objective and subjective CI, (2) objective CI, (3) subjective CI, and (4) no CI (defined in this article: cognitive groupings). After charting was completed, the existing qualitative literature was consulted to deductively review and apply further interpretation of the constructed framework matrix to existing theoretical concepts. Themes were organized into a concept map using PowerPoint for Mac (version 16.70).
Cognitive groupings (CI type)
The groupings were defined as objective and subjective CI (group 1), objective CI (group 2), subjective CI (group 3), and no CI (objective or subjective; group 4). Objective CI classification was based on results from the ACR‐NB. Participants who scored less than 2 z‐scores in one or more cognitive domains and/or less than 1.5 z‐score in two or more cognitive domains (ie, manual motor speed/dexterity, simple attention/processing speed, visual spatial construction, verbal fluency, learning/memory, and executive function) were classified with objective CI.
Subjective CI classification was determined using the PDQ‐20 and participant interview responses. If participants indicated “often” or “almost always” to one or more of the 20 items on the PDQ‐20 and/or responded “yes” when asked in the interview if they are currently experiencing CI, they were classified with subjective CI.
RESULTS
Twenty‐four interviews were completed with individuals living with SLE. Cognitive subgroups and participant characteristics are provided in Table 1. When reviewing our analytic framework and comparing the responses from the four cognitive subgroupings, there were few differences suggesting that regardless of the way CI is measured, subjectively or objectively, the impact remained the same (Table 2). However, those within a subjective CI group (either group 1 or 3) characterized the involvement of mental health difficulties in perpetuating or exacerbating their self‐reported experience of CI. They also employed more frequent and diverse adaptations to manage their mental health difficulty, which had a secondary effect on their experience of CI.
Table 1.
Participant characteristics and cognitive groupings
| Characteristics (n = 24) | Mean (SD)/n (%) |
|---|---|
| Age, y | 42 (13) |
| Female, n (%) | 20 (83) |
| Ethnicity, n (%) | |
| Caucasian | 18 (75) |
| Black | 4 (17) |
| Other | 2 (8) |
| SLE disease duration, y | 13 (10) |
| SLEDAI‐2K | 2.21 (2.45) |
| SDI | 1.04 (1.26) |
| Current immunosuppressant use, n (%) | 15 (63) |
| Current anti‐malarial use, n (%) | 20 (83) |
| Current biologic use, n (%) | 3 (13) |
| Prednisone amount mg/day | 3.42 (5.95) |
| Cognitive groupings | n (%) |
| Group 1: Objective and subjective CI | 11 (46) |
| Group 2: Objective CI only | 5 (21) |
| Group 3: Subjective CI only | 6 (25) |
| Group 4: No CI | 2 (8) |
CI, cognitive impairment; SDI, Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index; SLE, systematic lupus erythematosus; SLEDAI‐2K, Systemic Lupus Erythematosus Disease Activity Index‐2000.
Table 2.
A summary table comparing the responses from the four cognitive subgroupings based on our analytic framework.
| CI groups | ||||
|---|---|---|---|---|
| Themes | 1: Objective and subjective CI (n=11) | 2: Objective CI only (n=5) | 3: Subjective CI only (n=6) | 4: No CI (n=2) |
| Characterisation of self‐reported cognitive impairment (current and past) | Cognitive fatigue/brain fog; Concentration/attention; Confusion; Language; Memory and new learning; Miscellaneous | Concentration/attention; Executive function; Memory; No cognitive problems | Brain fog/cognitive fatigue; Concentration/attention; Emotional processing; Executive function; Language; Memory and new learning | Brain fog; Concentration; Memory and language |
| Number of quotes: 29; Percentage of participants contributing to quotes: 100 | Number of quotes: 7; Percentage of participants contributing to quotes: 80 | Number of quotes: 21; Percentage of participants contributing to quotes: 83 | Number of quotes: 4; Percentage of participants contributing to quotes: 100 | |
| Perceived cause of cognitive impairment |
Anxiety/depression; Lupus/disease activity; Medication; Not lupus Sleep/tired/fatigue |
Overburdened; Tired | Brain fog; Comorbidities; Environment (noise); Overburdened; Pain; Tired/sleep/fatigue | Lupus/disease activity; Medication; Pain |
| Number of quotes: 12; Percentage of participants contributing to quotes: 45 | Number of quotes: 3; Percentage of participants contributing to quotes: 20 | Number of quotes: 10; Percentage of participants contributing to quotes: 67 | Number of quotes: 5; Percentage of participants contributing to quotes: 100 | |
| Perceived impact of cognitive impairment on activities of daily living and life role participation | Domestic/social; Driving; Education; General‐all aspects; Health; Leisure; Work | Work | Domestic/social; Education; Work | Education |
| Number of quotes: 18; Percentage of participants contributing to quotes: 91 | Number of quotes: 1; Percentage of participants contributing to quotes: 20 | Number of quotes: 12; Percentage of participants contributing to quotes: 67 | Number of quotes:1; Percentage of participants contributing to quotes: 50 | |
| Adaptations for managing cognitive impairment | Brain training; Environmental (silence); Family/friends help; Improve self‐esteem; Memory aids; Pacing and prioritization; Routines/systems/strategies; Techniques to reduce; Anxiety/improve focus; Work on own | Memory aids; Organisation/focus; Pacing and prioritisation | Acceptance; Focus concentration; Friends/family help; Language adaptation; Medical/professional intervention; Memory aids; Pacing and prioritization; Routines/systems/strategies; Technological help | Memory aids; Pacing and prioritisation |
| Number of quotes: 34; Percentage of participants contributing to quotes: 82 | Number of quotes: 7; Percentage of participants contributing to quotes: 60 | Number of quotes: 30; Percentage of participants contributing to quotes: 83 | Number of quotes: 2; Percentage of participants contributing to quotes: 50 | |
| Influence of cognitive impairment adaptations on activities of daily living and life role participation | Domestic/social; Travelling; Work |
Domestic; General‐all aspects; Health; Interventions |
||
| Number of quotes: 6; Percentage of participants contributing to quotes: 18 | Number of quotes: 0; Percentage of participants contributing to quotes: 0 | Number of quotes: 7; Percentage of participants contributing to quotes: 17 | Number of quotes: 0;Percentage of participants contributing to quotes: 0 | |
CI, cognitive impairment.
Five overarching themes were summarized and represented among the entire set of qualitative interviews: (1) characterization of self‐reported CI, (2) perceived cause of CI, (3) perceived impact of CI on activities of daily living and life role participation, (4) adaptations for managing CI, and (5) influence of CI adaptations on activities of daily living and life role participation (Figure 1).
Figure 1.
Relationship between SLE‐related CI, activities of daily living, and life role participation. CI, cognitive impairment; SLE, systemic lupus erythematosus.
Theme 1: Characterization of self‐reported CI
When describing problems with their cognition, participants responses fell into six different cognitive domains. The six domains were memory and new learning, executive function, concentration/attention, language, emotional processing, and processing speed. The most reported cognitive complaint was memory. Most participants expressed difficulty with short‐term and working memory when following instructions or performing procedural, step‐by‐step tasks. They expressed that they would be forgetful if they did not perform the task immediately. Some participants described common cognitive complaints experienced by the general population (eg, difficulty with word finding, recall of information, and forgetfulness) but with an awareness that it was more impairing than it used to be before their lupus diagnosis.
“With cooking, I can't always recall how I make something – you know, a certain recipe and have to refer back to it on a regular basis. It's something I may have made 50 times, and I feel I should remember, but I cannot. Now, I'm meeting quite a few new people through different things, through different activities, and I have a hard time recalling people's names at times as well.” (1267)
“When lupus hit my brain, it became almost impossible for me to retain the information. That's frustrating to me…” (1438)
The second most reported cognitive complaint was concentration/attention. Many described it as an inability to focus, despite trying, or being easily distracted.
“You are trying to focus on the subject, and it's just like your mind goes blank.” (1899)
“I can't focus on one thing, because I keep thinking of others things that I need to do, and unless I write them down right away, I can't keep focused.” (1917)
Participants often found their cognitive problems hard to explain and were unable to mention a deficit in a specific domain but more of a feeling of brain fog or confusion. Descriptions such as “cloudy in brain,” “whole mind just leaves,” “feeling foggy or out of it,” “like extracting water from a stone,” or “brick all up” were used. It is also worth noting that some participants stated they felt they had no CIs.
Theme 2: Perceived cause of CI
Participants attributed their CI to poor sleep, tiredness, fatigue, lupus disease activity, mental health challenges, medication side effect, being overburdened, pain, and their environment (often noise levels). The most frequently reported cause was sleep problems and fatigue, followed by lupus disease activity. There was a belief among some participants that the ability to concentrate had been reduced because of lupus, whereas others reported that their difficulties with attention/concentration were unrelated to their lupus diagnosis and in fact, because of aging or mental health difficulties. Some participants reported that their CI was secondary to sleep difficulties and that their CI would fluctuate in response to their sleep quality.
“Depending on how tired and exhausted I am… So, if I haven't slept very well,… then that obviously would make my cognitive ability much less.” (1438)
“Your brain gets tired. I don't know if a lot of people realize that. As your brain gets tired, they think, well, they're just tired, but the brain is actually tired.” (936)
“I don't know what it is about the morning. I do know that anxiety would definitely attribute to my memory loss… or not memory loss but my concentration, that kind of stuff.” (1655)
Theme 3: Perceived impact of CI on activities of daily living and life role participation
The aspects of daily living and life role participation that were predominantly reported as affected were work, leisure, education, health, and domestic/social. Problems with concentration, memory or thinking processing speed were reported to affect work performance and, in some cases, result in work disability. These problems often left participants feeling unreliable or unable to function in their work or educational roles. Tasks that were previously easy became a constant struggle for participants when managing their CI.
“When I'm looking at cognitive function, I don't believe that I would be a good employee, for many reasons. Concentration issues was one, and also reliability for my health. I do volunteer currently, but I cannot do as much as I would like to because I really am not reliable, and I feel that I cannot commit to being more active in a volunteer function.” (1267)
“I was thinking of going back to school, and I don't think I could do it anymore. I don't think I could memorise my classwork and pass exams, because things don't stick in my brain.” (844)
Problems with memory and concentration restricted participation in activities within domestic, social, and leisure settings. Daily tasks, such as cooking, became harder because of forgetting simple instructions or stepwise actions, and hobbies, such as reading, were stopped by some because of an inability to concentrate as well as they once could. They felt misunderstood by friends and colleagues when discussing their challenges with CI and consequently this affected their self‐esteem. They spoke about frustrations, feelings of guilt, and unhappiness about how their CI affected their independence and relationship with spousal partners and family. Some participants reported avoiding attending certain social situations as they could not keep up with conversations and having to multitask was no longer possible.
“So, there's times where if I'm going, for example, into a situation where there's a big family get‐together and I know it's not going to be Okay… that sometimes can be too much for me, so we either have to leave early, or we can't go.” (1438)
Theme 4: Adaptations for managing CI
The most frequently reported method for managing CI were memory aids, for example, writing things down, using mobile applications, having a calendar of appointments/engagements, and setting electronic reminders. Many of the participants had an awareness of their limitations because of CI and had self‐identified techniques to cope with these problems. Participants noted the importance of pacing, prioritization, and planning to manage their CI, but also their fatigue. It was consistently reported that adaptations that addressed fatigue also had a secondary effect on their ability to manage their CI. This was done in different ways, from acknowledging how a short break can improve concentration to having a full day's prioritizing plan to manage their energy expenditure.
“One of the things – and it sounds so simple – is having a daily task planner where, usually the night before, I will write down what my next day's task will be. I'm essentially budgeting my energy, as well as my tasks for the day. Everything has been assigned a point value, so, if you will, having a shower is assigned a point. Making the bed is assigned a point. Doing a load of laundry – like, putting it into the washing machine and taking it out and putting it into the dryer – is assigned a point. So, everything acquires this value, and writing this all out in terms of tasks and adding up how much energy you're spending in a day has been extremely helpful.” (1966)
Environmental conditions were also important. Some participants required silence to aid with their concentration, whereas others found music or white noise helped. Those in the latter group indicated that the noise helped with mood as well as concentration. Additionally, participants talked about having set routines to minimize forgetting something important, such as medication or understanding the world around you. Other strategies employed involved using templates to guide work and ensure nothing was missed.
“My routine is very rigid, but that's how I find I function the best.” (886)
Support from family and friends, to help with cognitive difficulties, was frequently mentioned. This support was sometimes task specific, such as reminders or taking over their financial responsibilities. Psychosocial and emotional support was also essential when participants became overwhelmed by a situation or fatigued. Participants often asked for support and reported that their family members made adaptative changes to support them. Those participants that were unsupported by their interpersonal relationships reported more difficulties in managing their CI and fatigue.
Only one participant mentioned medical interventions for CI in SLE. This was in the form of medication, as well as cognitive rehabilitation. Both were believed to help manage their CI.
“I've been doing cognitive rehabilitation since this summer, which I had found very helpful, by the way, helping me with skills and tools to better manage my memory and my disorganized thoughts and planning and things like that.” (1966)
Theme 5: Influence of CI adaptations on activities of daily living and life role participation
Participants identified limitations due to their CI but also methods for coping with these problems. Some methods caused additional restrictions, such as only traveling with a companion. There are other instances in which participants mentioned that they would forget to use their self‐directed memory aids or adaptations to manage their CI.
“I will not get in the car to go too far unless I have my daughter with me. I won't get on a plane by myself just in case I forget, you know, what I'm doing. I used to do that on my own, but I won't do that anymore, not with the lupus.” (1914)
However, most of the adaptations had a positive impact. Sticking to daily routines enabled one participant to continue to have an active role in their granddaughter's life.
“I did manage, but again, her and I had a routine. We did the same thing every day, and that was huge for me because from that time when I babysat her, I realized that I can have a regular life, as long as I have a system in place.” (886)
The participants reported that pacing, prioritizing, and planning have enabled them to continue functioning within their life roles of work, domestic/social, and education. The help of family and friends also enabled greater participation and stronger relationships. Some participants reported that adaptations may need to be modified to ensure they continue to be helpful.
DISCUSSION
Five main themes were identified when discussing CI and daily living with patients with SLE. The participants characterized their CI, what they believed to be the cause, what impact CI has on daily living, the adaptations they made to cope with CI, and how these adaptations helped with activities of daily living and life role participation. These results provide a better understanding of the patient experience of CI in SLE, how it impacts their lives, and what coping strategies they employ.
Participants in this study identified six SLE‐related CI, with memory and concentration being the most reported problems. This is similar to what is found in studies examining objective CI. 39 Participants also identified a cognitive issue that they could not quite define but often used the term brain fog. Brain fog is a reoccurring theme in cognitive SLE research that needs better defining. 7 , 30 Overall, the participants reported that these CI resulted in activity limitations and changes in their independence. This is consistent with qualitative studies of SLE examining CI and its influence on HRQoL. 19 , 40 These reported changes in their independence resulted in altered participation in their assumed life roles and greater dependency on their immediate family and close interpersonal relationships.
Regarding the perceived cause of CI, some participants did not report a direct link between CI and SLE disease activity but that other symptoms indirectly associated with SLE may have a greater influence. These participants ascribed their experience of CI to fatigue, decreased sleep quality, and mental health symptoms. A similar finding was reported by Gallop et al with CI in SLE mostly attributed to fatigue. 19 In both our and their study, participants could describe the positive impact of available psychosocial support/resources on managing their CI. Therefore, findings from this study suggest that screening for psychosocial and interpersonal support systems among patients with SLE‐related CI may be important in helping to develop effective management of CI long‐term by potentially putting in place additional support systems for those without. Studies of patients with SLE have also suggested a positive relationship between HRQoL and perceived social support. 41 , 42 , 43 A study by Kozora et al found that the use of social support as a coping mechanism was associated with fewer reported depressive symptoms in patients with SLE. 44 By targeting psychosocial functioning through social support as an intervention to SLE‐related CI, there may be an increase in life role participation and self‐efficacy and a decrease in activity restriction that may be associated with an improved quality of life.
Most participants in this study identified that SLE‐related CI impacted their ability to participate in work, social/domestic, and educational opportunities. These findings are supported by existing literature that have reported a limiting and negative impact of CI on employment status and social/domestic relationships. 19 , 45 , 46 It is important to acknowledge that other intertwined SLE factors, such as depression, may affect unemployment and social/domestic relationships. 47 We found that those with subjective CI were able to characterize the involvement of mental health difficulties in perpetuating or exacerbating their self‐reported experience of CI. This was not surprising as subjective CI indicates a self‐monitoring of the impairment and its influence on their daily activity and life role participation. These participants also reported more diverse adaptations and were more likely to pursue medical interventions to treat their mental health conditions rather than target their CI specifically. These findings are important considering that previous SLE studies have found a link between CI and poor psychological functioning. 48 Future studies should further investigate the relationship between SLE‐related CI and psychological functioning in the context of activities of daily living and life role participation.
There were many adaptations identified to manage CI in this study. The strategies identified were problem‐focused (eg, memory techniques, energy conservation) or approach focused (eg, psychosocial support, medical interventions). These adaptive approaches have been identified in previous qualitative studies of patients with SLE. 14 , 49 However, we did not find any discussion of patient‐provider relationship as an adaptation to manage SLE‐related CI as identified in previous qualitative research. The omission of patient‐provider relationships as an adaptation may have strong clinical implications as we understand the effects of CI on HRQoL and life role participation. To date, there is only one paper reporting on the use of cognitive therapy in treating subjective CI in SLE and the results were promising. 50 There is a significant gap in SLE‐CI research for this intervention. Future research should examine the impact of medical/therapeutic interventions and patient‐provider relationship on long‐term outcomes of patients with SLE‐related CI to provide more evidence for SLE services requesting access to additional cognitive therapies.
In terms of study limitations, the four cognitive groupings were not equally split with only two participants in the no CI group. This can be justified by the high prevalence of subjective CI by PDQ‐20 and on the adopted definition for subjective CI. This may be more representative of an SLE cohort. Also, we acknowledge that disease duration may have impacted or affected our findings given that a longer disease duration would likely result in better and more varied adaptation. Lastly, although participants were asked to check the interview transcripts for accuracy, they were not asked to review for any missing information that they would like to add. One strength of this study is the involvement of three people from different backgrounds, medical, psychological, and academic research, in the analysis of the data, which gave a more diverse view of the data.
This study highlights the long‐term challenges those with CI in SLE undergo and provides evidence for the urgent need to implement multidisciplinary intervention options. When managing CI, it may be beneficial to evaluate and understand available psychosocial support resources to help identify and reinforce relevant adaptations to improve HRQoL. Further exploration of nonpharmacological interventions, especially in the treatment of subjective CI, is needed. The lack of descriptive differences between our CI groupings suggests that regardless of the type of CI defined, subjective or objective, the impact and challenges experienced by the patients remain the same. Therefore, clinicians should focus on improved screening of cognitive symptoms in patients with SLE to support with early development of adaptation(s) and accessibility to treatment options. SLE organization can also support this initiative by increasing patient awareness of cognitive dysfunction in SLE and provide home‐based strategies to adapt to cognitive barriers. Greater collaboration of clinicians with occupational therapists and social workers to target environmental barriers, individual cognitive risk factors, and psychosocial difficulties may also be warranted.
AUTHOR CONTRIBUTIONS
All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Dr. Touma had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study conception and design
Chattu, Ban‐Fatemi, Engel, Vitti, Nalder, Goverover, Gignac, Bonilla, Anderson, Tartaglia, Nowrouzi‐Kia, Touma.
Acquisition of data
Kakvan, Engel, Bonilla, Anderson, Nowrouzi‐Kia, Touma.
Analysis and interpretation of data
Barraclough, Howe, Soberanis, Nielsen, Nowrouzi‐Kia, Touma.
Supporting information
Disclosure form
Supplementary Figure S1: Interview Guide
ACKNOWLEDGMENTS
We would like to acknowledge the generous donation of our patients’ time and the dedication of the University Health Network clinic staff on the completion of this project.
[Correction added on 7 December 2023, after first online publication: The article title has been corrected.]
Supported by grants from Lupus Canada, the Arthritis Society of Canada, the Canadian Institutes of Health Research, Physician's Services Incorporated, the Province of Ontario Early Research Award, and the Lupus Research Alliance. Dr. Engel's work was supported by a postdoctoral research fellowship from the Arthritis Society. Dr. Touma's work was supported by the Department of Medicine, University of Toronto. Dr. Touma's laboratory is supported by Lupus Ontario, the Schroeder Arthritis Institute, and donations from the Kathi and Peter Kaiser family, the Lou and Marissa Rocca family, and the Stacey and Mark Krembil family.
Authors Barraclough and Howe contributed equally to this work.
Additional supplementary information cited in this article can be found online in the Supporting Information section (http://onlinelibrary.wiley.com/doi/10.1002/acr2.11624).
Author disclosures are available at https://onlinelibrary.wiley.com/doi/10.1002/acr2.11624.
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Supplementary Figure S1: Interview Guide