Laura Plantinga, PhD, on Cognitive Assessments Among Patients With SLE
Despite the fact that patients with systemic lupus erythematosus (SLE) report symptoms of cognitive problems, assessment of cognitive function is not routine among clinicians caring for these patients. To date, the effect of cognitive issues on the management of SLE is not well understood. Recently, Laura Plantinga, PhD, from Emory University in Atlanta, Georgia, and colleagues conducted a pilot study (Approaches to Positive Patient‐Centered Experiences of Aging in Lupus study—APPEAL) to investigate the utility of the National Institutes of Health Toolbox in assessing cognition among patients with SLE. Dr Plantinga agreed to answer some questions about this study for Rheumatology & Arthritis Learning Network.
RALN: You and your colleagues recently published a study on the relevance of cognitive assessments among patients with systemic lupus erythematosus (SLE). You observed your article that cognitive assessment of patients with SLE is not routine. Yet it’s well known that SLE can affect cognitive function. Why do you think this discrepancy exists?
Dr Laura Plantinga: This discrepancy is likely a consequence of multiple factors, including not only a lack of tools to assess cognitive function in the clinical environment---which our study begins to address---but also limited provider time, lack of understanding of the impact of these issues on patients’ day-to-day lives, and lack of provider confidence in addressing cognitive issues (and, in many cases, corresponding lack of multidisciplinary team support).
RALN: You also mentioned that due to this lack of assessment, little is known about day‐to‐day cognitive problems and their effect on management of SLE. Did your study reveal any new information on the types and severity of cognitive problems seen among patients with SLE and how it can affect their disease management?
Dr Plantinga: Yes, through our qualitative interviewing technique, we were able to elicit several patient and provider stories across multiple domains of cognitive functioning. With respect to disease management, medication adherence issues were frequently mentioned by both types of participants. Other patient stories involved general safety (e.g., problems with driving) and employment and education issues (e.g., inability to complete tasks).
RALN: Your study was part of a pilot program to investigate a prototype of a cognitive functioning report to be used in shared decision making between patients and clinicians. You investigated the relevance of cognitive assessments performed using the NIH Toolbox among patients with SLE. Can you tell us more about this toolbox?
Dr Plantinga: The NIH Toolbox is a set of performance measurements that assess not only cognitive but also emotional, sensory, and motor functions, assessed via an iPad. These measurements were developed and validated with the purpose of developing a relatively inexpensive, standard set of measures that could be used across studies and populations for direct comparisons of performance. For our study we included the fluid cognition domains (episodic memory, working memory, processing speed, attention and inhibitory control, and cognitive flexibility).
RALN: How did you evaluate the relevance of the cognitive assessments made?
Dr Plantinga: Relevance of each domain was assessed by asking participants, in an open-ended conversation, whether the ability was important in their daily lives, and if so, how; and if not, why not. Questions were prompted by the report itself, which illustrated a daily task that might be affected by impairment in the domain.
RALN: One interesting aspect of your results was the fact that patients “identified all NIH domains with rich experiential examples,” while providers identified fewer domains and offered less detail. In addition, patients more frequently mentioned the use of technological aids than did the clinicians. What do these results indicate?
Dr Plantinga: We believe these results reflect that, while SLE providers may often see cognitive impairment as a single entity that is discussed briefly in clinic, with few if any solutions, patients who live with SLE spend more time considering the daily impact on their lives and finding innovative support mechanisms, such as technological aids.
RALN: You commented that you found an unanticipated additional domain — prospective memory, or problems in remembering future actions. Can you tell us more about this domain and how it can be measured in patients with SLE?
Dr Plantinga: Because prospective memory refers to the ability to remember to perform an action in the future, it is tied closely with SLE self-management (remembering medications, follow-up appointments). It is also very amendable to technologic support (adding reminders to calendars/phones). As far as we know, it has not been specifically measured in SLE patients (and it not part of the NIH Toolbox, although it is related to episodic memory). Determining the added value of prospective memory measurement represents a future research opportunity.
RALN: All participants expressed interest in discussing cognition in clinic. That being the case, what have been the barriers to regular assessment of cognition: the time it takes? Do clinicians lack the tools they need? Are either or both patients and physicians reluctant to broach the subject?
Dr Plantinga: The barriers definitely include time and a lack of tools, as well as provider lack of confidence in addressing cognitive issues, a lack of team support (e.g., having a nurse or social worker with the time to perform assessments and explain results to patients), and/or a lack of options for referral (e.g., to neuropsychologists). At least within our small sample, it does not appear that patients are reluctant to broach the subject, but providers may be reluctant to pursue the subject in depth, for the reasons listed.
RALN: In your conclusions, you note that cognitive problems and indications of communication gaps suggest the appropriateness of more clinical communication about cognition in this population. How would you advise physicians who treat patients with SLE to go about bridging this gap? What are some practical steps they can take to make cognitive assessments a regular part of their practice?
Dr Plantinga: We recognize that not all physicians will be able to take the time to do detailed cognitive assessments; however, understanding the complexity of the problem might lead to better care through referrals to other specialty providers and also reassure the patient that the physician recognizes the problem and its impact. Generally, I think physicians being willing to discuss the topic of cognition (and raising the topic if the patient doesn’t) would probably go a long way toward improved patient-provider communication and trust, which would lead to greater understanding of the issues and potential support solutions on both sides. Rather than saying “lupus fog is common” providers could probe with more specific questions (“do you find you are forgetting things you used to know?”, “do you feel like you are unable to react to things as quickly as you used to?”, “do you feel like you can do two things at once?”) might open up the conversation as well.
Reference:
Vandenberg AE, Drenkard C, Goldstein FC, et al. Cognitive problems and their clinical assessment in SLE: contrasting patient and provider views. Arthritis Care Res. Published online ahead of print March 18, 2021. https://doi.org/10.1002/acr.24599
