Utility of a Functioning Report for Lupus Patients and Their Providers
Abstract
Older age is often associated with reduced ability to carry out the tasks of everyday life, known as functional impairment. However, even relatively young lupus patients report substantial functional impairment, related to declines in physical and mental (cognitive) abilities. While functional impairment is an important outcome to patients, management of lupus tends to emphasize clinical factors such as disease activity. Encounters between lupus patients and their providers may not include discussions of functional impairment. If providers do not recognize functional impairment in lupus patients, treatment plans may be suboptimal because they do not take a holistic view of the patient. Tools to improve the recognition or facilitate the discussion of functional impairment specifically in the lupus population are lacking. To address this gap, we will leverage existing detailed physical and cognitive functioning data from a recently completed pilot study of lupus patients of all ages [Approaches to Positive, Patient-Centered Experiences of Aging in Lupus (APPEAL)], as well as an existing, app-based, patient-friendly physical functioning report that is being used in an ongoing study in another chronic disease population. Our objectives are to determine whether this existing physical functioning report is applicable in the lupus population and to determine patient and provider preferences for the content and presentation of additional information on cognitive functioning in this population. This study contributes to the first FY17 LRP Focus Area (understanding of lupus disease heterogeneity) by providing a strategy/technology to subtype patients based on level of functioning. The individualized functioning report also provides a means to delivery of personalized medicine and insight into the variation in treatment and its effects on outcomes that are often prioritized by lupus patients. This work has the potential to help all lupus patients, as functional impairment is common in both older and younger lupus patients and could potentially be delayed by interventions (e.g., referrals to physical or occupational therapy) when it is identified. While our work focuses on a primarily civilian population, it is likely that military and Veteran populations with lupus have similar or possibly even higher levels of functional impairment (due to comorbid injuries and illnesses that may be more common than in the general population), and would also benefit from a functioning report to be used in patient-provider encounters. The potential benefits of the report include delay of further impairment (or even partial reversal of current impairment); improvement in patient-provider communication via a focus on patient-centered outcomes; and more individualized treatment plans. These outcomes could occur fairly immediately or over time, depending on the individual issues uncovered. Risks include the potential for emotional distress or embarrassment in discussions of functional impairment with the provider, which could be avoided by opting out of receiving or sharing a report. This study will inform whether and how the delivery of information about functional impairment can be optimized for lupus patients and providers. The results of this study will also guide future work assessing effectiveness and feasibility of the report in the clinical setting, potentially improving lupus patient-provider communication and treatment adherence, as well as delaying or preventing further declines in functioning among lupus patients.
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Oct 29, 2018
- Source ID
- W81XWH1810619
Entities
People
- Laura C Plantinga
Organizations
- Emory University
- United States Army