Evaluation of Factors Associated with Patient-Caregiver Activation and Clinical, Quality of Life, and Utilization Outcomes in Juvenile Idiopathic Arthritis

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Publication Date

5-2-2025

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Presentation: 53:29

Abstract

Juvenile idiopathic arthritis (JIA) is the fifth most common chronic disease in childhood and is the most common cause of childhood disability in the United States. Patient activation, measured by the Patient Activation Measure (PAM-13), is often used in chronic disease populations to assess a patient’s skills, knowledge, and motivation needed to successfully manage their condition. Patient activation and associated characteristics that impact activation may be important modifiable targets for improving clinical outcomes and reducing healthcare utilization and costs in patients with JIA. This study sought to investigate patient activation in JIA and its relationship with demographic and clinical factors at diagnosis, as well as clinical outcomes at one year following diagnosis.

This was a single-center, cross-sectional, observational study. A total of 100 follow-up JIA patients who were diagnosed 12 months prior (+/- 3 months) participated in the study. A parent-proxy completed the survey if patients were under age 13, both the patient and parent-proxy completed the survey if patients were aged 13 to 17, while patients 18 years or older completed the survey. Demographic and clinical data were collected either directly from the patient/parent-proxy or from the medical record, The primary survey measure was the PAM-13, in addition to the CQR5, PACIC, and PedsQL. or Descriptive statistics were computed for all variables of interest. Linear regression models were used to assess the relationship between PAM-13 and covariates.

The results showed that PAM-13 across the JIA population was high (69.4 ±15.6). The regression models showed that JIA patients scoring in the highest levels of patient activation were more likely to be female, younger at diagnosis, with less than 15 minutes of reported morning stiffness at diagnosis, and higher psychosocial quality of life at one year following diagnosis.  The results indicated that there are some predictors at diagnosis and more at one-year following diagnosis that may predict patient activation, which suggests that the PAM-13 is dynamic and should be collected longitudinally in this population. The findings emphasize the need for additional, greater-scale studies on the role of patient activation in JIA patients to better understand factors that influence it over time.

Language

English

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