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PURPOSE: To assess the validity of the Patient Activation Measure (PAM13) of patient activation in persons with neurological conditions.

METHODS: "The Everyday Experience of Living with and Managing a Neurological Condition" (The LINC study) surveyed 948 adults with neurological conditions residing in Canada in 2011 and 2012. Using data for 722 respondents who met coding requirements for the PAM-13, we examined the properties of the measure using principle components analysis, inter-item correlations and Cronbach's alpha to assess unidimensionality and internal consistency. Rasch modeling was used to assess item performance and scaling. Construct validity was assessed by calculating associations between the PAM and known correlates.

RESULTS: PAM-13 provides a suitably reliable and valid instrument for research in patients with neurological conditions, but scaling problems may yield measurement error and biases for those with low levels of activation. This is of particular importance when used in clinical settings or for individual client care. Our study also suggests that measurement of activation may benefit from tailoring items and scaling to specific diagnostic groups such as people with neurological conditions, thus allowing the PAM-13 to recognize unique attributes and management challenges in those conditions.

CONCLUSIONS: The PAM-13 is an internally reliable and valid tool for research purposes. The use of categorical activation "level" in clinical settings should be done with caution.