Pain is the number one reason adults with sickle cell disease (SCD) access the healthcare system. To adequately treat pain first requires accurate assessment, however, there are no pain measures that effectively capture the multidimensional phenomenon of SCD pain. One-dimensional measures of pain, such as the numerical 0-10 scale, have limited utility and are ineffective for guiding treatment. Multi-dimensional pain tools are long and complex, making them difficult for patients to use. There have been no attempts to create a multi- dimensional measure to assess and classify pain in SCD. The long-term goal of this project is to develop a comprehensive, patient-centered, pain assessment tool, that will improve patient-provider communication, pain diagnosis, and treatment of pain. The proposed R03 tests a novel electronic pain assessment tool called Painimation, that allows patients to use animations and graphical images to communicate their pain. Our primary objective will be to determine if Painimation is acceptable to patients and can be used as a valid SCD pain assessment tool. We hypothesize that Painimation will be more usable and acceptable to patients than standard scales.
In Aim 1, we will determine the usability and acceptability of Painimation for communicating and assessing pain among adults with SCD. We will test Painimation alongside other validated pain scales (the 0-10 visual analog scale, PainDETECT, and the McGill Pain Questionnaire) among 70 adults with SCD in a cross-sectional survey study. For each measure, we will evaluate usability, patient satisfaction, and perceived usefulness for communicating pain to providers.
In Aim 2, we will determine whether pain assessment using Painimation is associated with patients' quality of life and clinical outcomes. We will test the association of Painimation with patient-reported quality of life (ASCQ-Me) and objective health outcomes (i.e. organ damage, number of acute care visits for pain) to determine if Painimation is a viable outcome measure in clinical trials testing pain interventions. Finally, in an exploratory Aim 3, we will test whether Painimation can differentiate SCD pain types (e.g. neuropathic vs nociceptive). The proposed research is significant because it will lead to the creation of a brief, accurate, and user-centered pain assessment tool for use in SCD. Our team includes experts in IT, UX design, pain, and measurement development. Expanding Painimation, a novel, technology- based pain assessment tool, for use in SCD directly relates to and results from my K23 project and will advance my potential as an independent investigator to conduct large-scale (R01) studies examining the impact of pain interventions on health outcomes. Long-term, improved outcomes measurement will increase our ability to detect the effects of our mobile technology-delivered behavioral interventions.
This project is relevant to public health because it will determine whether a novel electronic pain assessment tool called Painimation, that allows patients to use animations to communicate their pain, will improve pain assessment and treatment among adults with sickle cell disease. This research is relevant to the part of NHBLI's mission that pertains to improving treatment options and symptom management for persons living with sickle cell disease and other underserved populations.