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.