Background Increased patient activation has been associated with reduced costs of treatment1 and improved patient outcomes2. The effect of primary Sjögren's syndrome (pSS) on patient activation however has not been established.
Objectives This study aims to identify how activated patients with pSS are, and to ascertain whether factors such as ESSPRI score, EULAR dryness score and self-reported quality of life influence this.
Methods Patient activation in 170 pSS patients was assessed using the 13-item Patient Activation Measure (PAM-13). A PAM-13 score from 0–100 was obtained using the PAM-13 Scoring Spreadsheet, which also gave a corresponding activation level ranging from 1–4. Descriptive statistics of the PAM-13 scores was performed, and frequency analysis of the corresponding activation level. Demographic, clinical and self-reported measures such as age, gender, ESSPRI score and EQ5D-3L score were linked to each patients' PAM-13 scores. Spearman's correlation analysis was performed to assess the relationship between the continuous variables and PAM-13 score, and Fisher's exact test was used to assess the relationship between activation level and the categorical variables.
Results The mean PAM-13 score of the 170 patients studied was 59.5 (SD 13.5). 17.6% of patients were in level 1 of activation, 26.5% in level 2, 40.0% in level 3, and 15.9% in level 4. The mean age of the sample was 59.6 (SD 13.1), and 83.5% were female.
EQ5D-3L score had the strongest correlation with increased PAM score (rs 0.405, p 0.000). Increasing self-reported pain in the ESSPRI questionnaire was correlated with a decreasing PAM score (rs -0.355, p 0.000), as was increasing ESSPRI score (rs -0.337, p 0.000). Increasing abnormal fatigue (rs -0.189, p 0.016) and EULAR dryness (rs -0.190, p 0.013) score were only weakly correlated with a decrease in PAM-13 score. Decreases in patients self-reported mobility (p 0.000), self-care (p 0.002), and ability to perform daily activities (p 0.018) were also associated with differences in activation score.
Conclusions Factors such as a patients self-reported health and pain have a moderate correlation with activation in pSS patients, while dryness and fatigue are only weakly correlated with changes in activation. This should be considered in the future when devising treatment plans and clinical trials.
Hibbard JH, Greene J, Overton V. Patients With Lower Activation Associated With Higher Costs; Delivery Systems Should Know Their Patients' 'Scores'. Health Affairs. 2013;32(2):216–222.
Hibbard JH, Greene J, Shi Y, Mittler J, Scanlon D. Taking the Long View: How Well Do Patient Activation Scores Predict Outcomes Four Years Later? Medical Care Research and Review. 2015;72(3):324–337.
Disclosure of Interest None declared