Pediatric-Collaborative Health Outcomes Information Registry (Peds-CHOIR): a learning health system to guide pediatric pain research and treatment

Rashmi P Bhandari, Amanda B Feinstein, Samantha E Huestis, Elliot J Krane, Ashley L Dunn, Lindsey L Cohen, Ming C Kao, Beth D Darnall, Sean C Mackey, Rashmi P Bhandari, Amanda B Feinstein, Samantha E Huestis, Elliot J Krane, Ashley L Dunn, Lindsey L Cohen, Ming C Kao, Beth D Darnall, Sean C Mackey

Abstract

The pediatric adaptation of the Collaborative Health Outcomes Information Registry (Peds-CHOIR) is a free, open-source, flexible learning health care system (LHS) that meets the call by the Institute of Medicine for the development of national registries to guide research and precision pain medicine. This report is a technical account of the first application of Peds-CHOIR with 3 aims: (1) to describe the design and implementation process of the LHS; (2) to highlight how the clinical system concurrently cultivates a research platform rich in breadth (eg, clinic characteristics) and depth (eg, unique patient- and caregiver-reporting patterns); and (3) to demonstrate the utility of capturing patient-caregiver dyad data in real time, with dynamic outcomes tracking that informs clinical decisions and delivery of treatments. Technical, financial, and systems-based considerations of Peds-CHOIR are discussed. Cross-sectional retrospective data from patients with chronic pain (N = 352; range, 8-17 years; mean, 13.9 years) and their caregivers are reported, including National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) domains (mobility, pain interference, fatigue, peer relations, anxiety, and depression) and the Pain Catastrophizing Scale. Consistent with the literature, analyses of initial visits revealed impairments across physical, psychological, and social domains. Patients and caregivers evidenced agreement in observable variables (mobility); however, caregivers consistently endorsed greater impairment regarding internal experiences (pain interference, fatigue, peer relations, anxiety, and depression) than patients' self-report. A platform like Peds-CHOIR highlights predictors of chronic pain outcomes on a group level and facilitates individually tailored treatment(s). Challenges of implementation and future directions are discussed.

Figures

Figure 1
Figure 1
Overview of Peds-CHOIR infrastructure
Figure 2
Figure 2
Figure 2a. Sample first page of Peds-CHOIR initial survey Figure 2b. Sample second page of Peds-CHOIR initial survey
Figure 2
Figure 2
Figure 2a. Sample first page of Peds-CHOIR initial survey Figure 2b. Sample second page of Peds-CHOIR initial survey
Figure 3
Figure 3
Figure 3a. Sample first page of Peds-CHOIR follow-up survey Figure 3b. Sample second page of Peds-CHOIR follow-up survey
Figure 3
Figure 3
Figure 3a. Sample first page of Peds-CHOIR follow-up survey Figure 3b. Sample second page of Peds-CHOIR follow-up survey
Figure 4
Figure 4
Peds-CHOIR rates of adherence
Figure 5
Figure 5
Observed distribution of patient-caregiver-reported PROMIS scores compared with reference distribution of PROMIS scores from a US Census population (approximated by a normal distribution) (N=352)
Figure 6
Figure 6
Sample patient-caregiver PROMIS scores.
Figure 7
Figure 7
Sample patient-caregiver pain catastrophizing and current pain level scores

Source: PubMed

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