High levels of patient self advocacy may confound clinical research in understudied patient populations

To examine the levels of patient self-advocacy in a sample of participants with Chiari Malformation (CM) and to explore how they relate to clinical outcomes. As part of a larger clinical trial addressing chronic pain in patients with CM, 111 participants completed the Patient Self Advocacy Scale (PSAS), the Depression, Anxiety, and Stress Scale (DASS-21), and the Brief Pain Inventory (BPI). PSAS scores indicated a moderately high level of patient self-advocacy (Mean = 3.86 SD = 0.50). The PSAS was not related to depression, anxiety, stress, pain intensity, or pain interference. There were no differences in PSAS according to surgical status (<i>t</i>(61.25) = 0.44, <i>p</i> = 0.66) or use of pain medication (<i>t</i>(109) = 1.05, <i>p</i> = .29). Participants in a clinical trial for CM have high levels of pre-existing patient self-advocacy. Research is needed to understand how patient self-advocacy contributes to the management of CM and how it could impact research of individuals with understudied conditions.Clinical Trials Registration:NCT05581472.