(111) Stanford-NIH Pain Registry: catalyzing the rate limited step of psychometrics with modern patient-reported outcomes

Kao, Ming-Chih J.; Cook, Karon F.; Olson, Gina; Pacht, T.; Darnall, Beth D.; Weber, Susan C.; Mackey, Sean

doi:10.1016/j.jpain.2014.01.017

Cited by 2 publications

(2 citation statements)

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“…CAT assessments are considered superior to traditional standard scale assessments because of the smaller number of items needed for effective assessment of each construct, as well as increased reliability of measurement. 12 , 19 CHOIR includes CAT versions of the PROMIS measures adapted with an in-house algorithm (CHOIR-CAT). CHOIR-CAT was implemented using the same CAT algorithm as the Northwestern University Assessment Center, which has provided open access to PROMIS instruments.…”

Section: Methodsmentioning

confidence: 99%

Pain interference and physical function demonstrate poor longitudinal association in people living with pain: a PROMIS investigation

Karayannis

Sturgeon

Chih-Kao

et al. 2017

Pain

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Section: Methodsmentioning

confidence: 99%

Pain interference and physical function demonstrate poor longitudinal association in people living with pain: a PROMIS investigation

Karayannis

Sturgeon

Chih-Kao

et al. 2017

Pain

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“…Pain Catastrophizing Scale) [58] and item-response theory measures, such as the NIH Patient Reported Outcomes Measurement Information System (PROMIS)[1]. PROMIS measures are (1) normed and validated in the US, providing a comparative metric across groups; (2) utilize computer adaptive testing [5,28,38] thereby decreasing respondent burden; and (3) enable comparison of results across studies [1]. CHOIR has been shown in previous empirical work to be an effective and useful tool in identifying predictors of functional outcomes in chronic pain conditions [56,57].…”

Section: Introductionmentioning

confidence: 99%

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

Bhandari

Feinstein

Huestis

et al. 2016

Pain

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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 (IOM) 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 three aims: to 1) describe the design and implementation process of the LHS; 2) highlight how the clinical system concurrently cultivates a research platform rich in breadth (e.g., clinic characteristics) and depth (e.g., unique patient and caregiver reporting patterns); and 3) 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; 8 – 17 years; M = 13.9 years) and their caregivers are reported, including NIH 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, 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.

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(111) Stanford-NIH Pain Registry: catalyzing the rate limited step of psychometrics with modern patient-reported outcomes

Cited by 2 publications

References 0 publications

Pain interference and physical function demonstrate poor longitudinal association in people living with pain: a PROMIS investigation

Pain interference and physical function demonstrate poor longitudinal association in people living with pain: a PROMIS investigation

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

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