Clinical Case Studies
Neuro-QOL Measures Collected at Cleveland Clinic
Researchers at Cleveland Clinic developed a suite of iPad-based assessments that are now shared across MS PATHS (Multiple Sclerosis Partners Advancing Technology and Health Solutions) centers. In addition to patient history, the assessments include Neuro-QoL measures. The measures are self-administered prior to routine appointments and, over time, document individuals’ trajectories on important health-related quality of life outcomes.
Previous work documented the validity of using the Neuro-QoL measures in samples of persons with MS. In a sample of persons with MS, the scales demonstrated good reliability, concurrent validity, known groups validity and responsiveness.
PROMIS® Measures Collected to Assess Symptoms and Outcomes
Collaborative Health Outcomes Information Registry (CHOIR) System
In 2012, the Collaborative Health Outcomes Information Registry (CHOIR) system was launched at Stanford Pain Management Center. CHOIR was developed as an open source, open standard, free platform for a learning health system and as a research registry. CHOIR was created in partnership with the National Institutes of Health. Data are collected as part of routine care using Internet-enabled devices (such as PCs, tablets, phones). PROMIS measures (e.g., Fatigue, Pain) are featured within CHOIR and computer adaptive tests are used to reduce response burden. As of April, 2016, approximately 15,000 unique patients had provided data over 64,000 visits (40,000 follow-up visits). The results are used: (1) to inform treatment, (2) for longitudinal assessment of patients and effects of treatment; (3) comparative effectiveness research; and (4) for software based decision making. Read the CHOIR study manuscript here. CHOIR has been adopted at additional sites across the country.
University of Utah mEVAL
The University of Utah has integrated PROMIS computer adaptive tests (CATs) in their electronic health record (EHR) as part of their mEVAL initiative. Patients are asked to complete an assessment through the EHR's patient portal or on a tablet computer at an appointment. CATs are automatically scored and results are available to care providers within the EHR.
PROMIS Emotional Distress and Sleep Disturbance Short Forms used in DSM-5 Field Trials
PROMIS adult, pediatric, and parent-proxy Depression, Anxiety, Anger, and Sleep Disturbance banks were selected as Level 2 cross-cutting symptom measures for inclusion in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders – Fifth edition (DSM-5).
The selection of these measures highlights the utility of self- and proxy-report measurement tools in a clinical context. Measures can be used to identify areas of mental health requiring clinical investigation and likely intervention, as well as systematically tracking changes in symptom levels over time.
The inclusion of these measures in a clinical context further supports the applicability of PROMIS within both the clinical and research communities, facilitating a stronger relationship between clinical practice and health outcomes research.