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 in Routine Clinical Care at a Children’s Hospital
The Cincinnati Children’s Hospital Medical Center (CCHMC) implemented system-wide assessment with PROMIS and other PRO measures. Across clinics, their completion rate is 75%. Their experience resulted in a publication (Gerhardt et al., 2018) describing recommendations for successful implementation including identification of a physician or nurse champion, matching measures with clinical need, knowing the meaning of scores including when and how to intervene, training providers and staff, and monitoring completion rates. Further discussion by (Lavallee et al, 2018) highlighted the need for such case studies.
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.
Shriners Hospitals for Children
Patients receiving care at Shriners Hospitals for Children were asked to complete PROMIS Pediatric (ages 8-17) or Parent Proxy (ages 5-7) short forms for Pain Interference, Peer Relationships, Upper Extremity Function, and Mobility on iPads. In real-time, results were scored and available immediately in the electronic health record through an interface with Tonic for Health. Real-time availability to the patients’ physicians provided valuable information and insights on issues that may need to be addressed. The combined data was available for statistical purposes.
PROMIS scores alerted physicians that certain patients were having additional problems that the providers were previously unaware of, prompting providers to integrate other professionals, such as physical therapists, in the patient's care. At Shriners, providers noted that often times children are more comfortable and forthcoming answering questions on the iPad than responding verbally to their physician.
10 Shriners Hospitals for Children locations (Salt Lake City, Greenville, Northern California, St. Louis, Lexington, Chicago, Twin Cities, Portland, Shreveport, Erie) are participating in the program, and have collected over 36,500 PROMIS Pediatric assessments, using more than 100 iPads. Over a 15-month period from April 2017 through July 2018, these hospitals saw a completion rate of 93%. With these achievements, PROMIS has been implemented as a standard of care tool and will be rolled out to all remaining Shriners Hospitals for Children locations.
To facilitate education with their Spanish-speaking patients, the Shriners team created this two-minute video in Spanish explaining the data collection process. Watch the data collection video in Spanish here>>