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 of those with Chronic Pain
Department of Defense
In 2009, Army Surgeon General LTG Eric Shoomaker (retired) chartered the Army Pain Management Task Force (PMTF) with the charge to recommend a comprehensive pain management strategy to improve the quality of life for soldiers and other patients with acute and chronic pain. One of the outcomes of this work was the development of the Pain Assessment Screening Tool and Outcomes Registry (PASTOR). To date, 12 PROMIS measures have been embedded within PASTOR. To reduce response burden, these measures are administered using computer adaptive testing. PASTOR is now being administered as part of routine care at the Madigan Army Medical Center (WA, USA) and at the Naval Medical Center San Diego (CA, USA). There are plans to roll out PASTOR at eight additional Army, Navy, and Air Force facilities. The long term goal is to make PASTOR available for use in all Department of Defense and Veterans Affairs medical facilities.
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.