Emily P Rabinowitz, Grant H Ripley, Chase Lemek, Philip A Allen, Douglas L Delahanty
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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.
期刊介绍：
ournal of Health Psychology is an international peer-reviewed journal that aims to support and help shape research in health psychology from around the world. It provides a platform for traditional empirical analyses as well as more qualitative and/or critically oriented approaches. It also addresses the social contexts in which psychological and health processes are embedded. Studies published in this journal are required to obtain ethical approval from an Institutional Review Board. Such approval must include informed, signed consent by all research participants. Any manuscript not containing an explicit statement concerning ethical approval and informed consent will not be considered.
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