Understanding Pain and Agitation Through System Analysis Algorithms in People With Dementia. A Novel Explorative Approach by the DIGI.PAIN Study.

Background: Many people with dementia (PwD) live and die with undiagnosed and untreated pain and are no longer able to report their suffering. Several pain assessment tools have been developed, tested, and implemented in clinical practice, but nursing home patients are reported to be still in pain. Clinicians and research groups worldwide are seeking novel approaches to encode the prediction, prevalence, and associations to pain in PwD.

Participants: The data in this analysis are acquired from the COSMOS study, a cluster-randomized controlled trial (2014 to 2015), aimed to improve the quality of life in nursing home patients ( = 723) through the implementation of a multicomponent intervention. We utilize baseline data of PwD ( = 219) with complete datasets of pain and agitation.

Method: Systems analysis explores the relationship between pain and agitation using the Mobilization-Observation-Behavior-Intensity-Dementia (MOBID-2) Pain Scale, Cohen-Mansfield Agitation Inventory (CMAI), and Neuropsychiatric Inventory-Nursing Home version (NPI-NH). For each patient, the individualized continuous time trajectory, and rates of change of pain and agitation are estimated. We determine the relationship between these rates by analyzing them across the entire group.

Results: We found that the new analysis method can generate individualized estimations for pain and agitation evolution for PwD, as well as their relationship. For 189 of 219 PwD, results show that whenever pain increases or decreases, agitation does too, with the same rate. The method also identifies PwD for whom pain or agitation remains constant while the other varies over time, and patients for whom agitation and pain do not change together. The algorithm is scalable to other variables and compatible with wearable devices and digital sensors.

Conclusion: We presented a new approach to clinical data analysis using systems concepts and algorithms. We found that it is possible to quantify and visualize relationships between variables with a precision only dependent on the precision of measurements. This method should be further validated, but incipient results show great potential, especially for wearable-generated continuous data.