Background/Purpose:

Patient activation refers to the ability and confidence people have to be engaged in managing their health care [Hibbard, 2004]. Knowledge and beliefs about one’s chronic condition and self-efficacy are both part of patient activation. In a rare, disease, such as systemic sclerosis (SSc), patients must manage their symptoms and advocate for their treatment. Patients with SSc were reported to have low self-efficacy compared to other chronic conditions [Thombs, 2017], they may also have low patient activation. Thus, the purpose of this study was to examine relationships between patient activation, self-efficacy and demographic variables that could influence patient activation.

Methods:

SSc participants, who were part of a larger study on self-management, completed the Patient Activation Measure (PAM). The PAM is a 13 item questionnaire that measures confidence in self-management of one’s chronic condition [Hibbard, 2005]. Higher scores indicate more confidence and knowledge in managing their condition. Based on total scores, patients are categorized into 4 levels: Level 1 (beginning to take role), Level 2 (building knowledge), Level 3 (taking action) and Level 4 (maintaining behaviors). Patients also completed a demographic questionnaire, the Patient Health Questionnaire (PHQ), the PROMIS-29 and PROMIS self-efficacy scales. Significant differences in PAM scores between subgroups were determined using t-tests, Wilcoxon tests or Fisher’s exact tests depending on the distribution of the variables. t-tests were used for variables that were approximately normally distributed, non-parametric Wilcoxon tests for non-normally distributed variables and Fisher’s exact tests for discrete, categorical variables. Pearson correlation coefficients were calculated to determine relationships between the PAM, PROMIS-29, PHQ-8 and PROMIS self-efficacy scales.

Results:

267 participants completed the questionnaires. Mean age was 53.7 years, disease duration from onset of first SSc symptoms was 11.9 yrs. 91% were women and 82.8 % were white. On the PAM, the majority of our sample (60%) were at Level 4 with 18.7% at Level 3, 11.2% at Level 2 and 10.5% at Level I. There were significant differences in PAM scores between patients without depressed mood (PHQ-8 <10) vs depressed mood (PHQ-8 >10) and for employment status (working full time vs not working full time). PAM activation scores moderately correlated with PROMIS self-efficacy scales for managing emotions (r=0.54, p<.0001), symptoms (r=0.65, p<.0001), social interactions (r=.58, p<.0001) and medications and treatment (r = 0.57, p<.0001). Correlations between the PAM and PROMIS self-efficacy for managing daily activities (r = .38, p < .0001) and all PROMIS-29 subscale scores were fair [r = -0.23 (PROMIS-29 pain intensity) to -0.49, p < .0001 (PROMIS-29 social and PROMIS-29 anxiety)]. Participants in Levels 3 or 4 had significantly better PROMIS-29 and PROMIS self-efficacy scores than participants at Levels 1 or 2.

Conclusion:

Conclusion: Our cohort with SSc had high levels of activation. The moderate correlations with self-efficacy suggest Participants with high activation had high self-efficacy but that they are still conceptually distinct constructs.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/relationships-between-levels-of-patient-activation-self-efficacy-and-demographic-variables-in-systemic-sclerosis/