High levels of Patient Self Advocacy may confound clinical research in understudied patient populations.

OBJECTIVE: 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. METHODS: 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). RESULTS: 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 (t(61.25) = 0.44, p = 0.66) or use of pain medication (t(109) = 1.05, p = .29). DISCUSSION: 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.