People with chronic pain have a new tool to answer the question: "Where exactly does it hurt?" A new electronic Collaborative Health Outcomes Information Registry (CHOIR) self-report body map is an innovative tool for precision health, allowing patients, clinicians, and scientists to describe the location and intensity of painful body regions.
Little is known about which specific treatment is the safest and most effective for a particular person with chronic pain. Many people struggle with conveying their multiple pain symptoms to their doctors, leading to frustrating delays getting to the right specialists, in turn leading to missed diagnoses and belated treatments. The CHOIR body map (CBM) is created to empower patients and give them an easy way to convey their chronic pain to their doctor effectively. Such information can be used to diagnose painful conditions more reliably and to guide optimal treatment.
The development of the CHOIR self-report body map started with an environmental scan and assessment of existing body maps. In our recently published article in Pain Reports, we showed this map to be an interactive visual tool that demonstrates utility, reliability, and construct validity, and that can be used to assess and monitor pain spread distribution accurately. Its main aim is to track, detect, localize, and communicate details that might be misinterpreted or lost with existing assessment methods. It serves as a quick pain locator and identifies common chronic pain conditions within specific body regions.
The CHOIR self-report body map outperforms traditional measures in both complexity and speed. It allows for easy and precise mapping of significant regional body pain. Researchers have previously developed a body map. However, they were limited by either being:
- Paper and pencil based
- Pain condition-specific
- Not representing key body regions commonly associated with pain, such as joints, the backside of the body, or left versus right side of the body.
It goes beyond current pain-body maps and offers patients greater control of their pain story. CHOIR self-report body map revolutionizes pain treatment. It complements existing body maps and gives patients, clinicians, and scientists more details and clarity often missing from traditional tools and offers a more objective measurement of pain.
We built upon existing legacy measures and conducted extensive interviews with people with chronic pain and clinicians to develop the CHOIR body map. We sought to find a balance between increasing precision of body regions and decreasing the burden to patients. For instance, a larger number of smaller body regions would have allowed patients to designate pain more precisely (e.g., individual finger, smaller regions in the back and pelvis, etc). However, we found that this led to greater survey burden for most people in pain with little gain in relevant information. While not perfect, we believe the CHOIR body map strikes a balance in precision vs. burden.
The CHOIR body map is validated in almost 600 people with chronic pain. Our results demonstrated excellent performance of the map in all of these validation studies. Furthermore, we used the interviews with participants and their suggestions to further optimize the body map. Clinicians and researchers have used the CHOIR body map in over 100,000 assessments across the CHOIR network worldwide.
We integrated the CHOIR body map into CHOIR — our open-source learning health care system. We developed CHOIR to provide high quality, point of care data to optimize care and real-world research discovery. Using a Web-based interface, CHOIR captures patient-reported outcome (PRO) data at each clinic visit, graphically displays real-time results that inform point-of-care decisions and tracks patient treatment responses longitudinally. CHOIR emphasizes tracking patient-generated information as a core component of clinical practice, allowing for individualized improvements in the health care delivery process over time and guiding precision medicine. In addition to its clinical utility, CHOIR has been an invaluable research tool to capture real-world research evidence, which has been a high priority by the Food and Drug Administration (FDA), National Institutes of Health (NIH), and National Academy of Medicine (NAM). Researchers have recognized that prospective, placebo-controlled randomized trials can be difficult to generalize due to participant homogeneity and require many resources (due to sample size).
Consequently, there has been a need for the generation of systematic practice-based evidence. CHOIR addresses this need by allowing low-cost, large, prospective, observational studies on thousands (or more) of patients in a "real-world" clinic setting. CHOIR and the CHOIR body map have resulted in approximately 30 publications to date, providing us novel insights into chronic pain causes and treatments. Finally, the CHOIR body map is also the primary body map used within REDCap tools. The NIH Multidisciplinary Approach uses a slight variation to the Study of Pelvic Pain (MAPP) research network.
We are currently using the CHOIR body map to provide pain condition-specific characterization, which has led us to develop a COPCs screener. This screener uses the CHOIR body map to then subsequently direct questions about particular pain conditions. For instance, checking off the low back region of the body map leads to low back pain-specific questions; checking off the head/face leads to headache specific questions. We implemented this successfully in CHOIR and will be reporting on our findings soon. One can readily imagine using this tool to characterize specific and overlapping pain conditions and directly online, on-demand digital treatments and educational resources for these conditions - thereby making therapies accessible and targeted to the person's needs.
Overall, the CHOIR body map is an essential tool to achieve the vision of a continuously learning health care system. There are endless opportunities for innovation and leadership to advance these learning health systems to achieve the best care at the lowest cost and to advance real-world research discovery.
The research was supported by the Redlich Pain Endowment, the Foundation for Anesthesia Education and Research and the National Institutes of Health.
