Higher PGI scores, which signify better quality of life, were positively correlated with all SF-12 subscales except for role emotional.
Quality of life (QoL) was most notably impacted in areas of physical activity, work and school, fatigue, and self-imagine in patients with juvenile idiopathic arthritis (JIA) who were diagnosed in childhood, according to a study published in The Journal of Rheumatology.1 The Patient Generated Index (PGI) also included factors of QoL that were not explored in other standardized measures.
“Individualized measures are generated from the patient’s own definition of the outcome being measured and may capture relevant aspects not assessed by standardized patient-reported outcome measures (PROMs),” investigators explained. “The PGI is an individualized measure designed to capture aspects important to the individual’s QOL by letting the respondents identify their own areas of importance, rate their function in these areas, and prioritize their desire for improvements in these areas. QoL can be defined as the individual’s perception of their position in life within the context of the culture and value system in which they live, and in relation to their goals, expectations, standards and concerns.”
A total of 79 patients who participated in a longitudinal study at Oslo University Hospital completed the PGI as well as the Health Assessment Questionnaire-Disability Index (HAQ-DI), 12-item Short Form Health Survey (SF-12) regarding the physical and mental health-related component (HRQoL), the Brief Pain Inventory (BPI; which included pain severity and interference), a 10-cm visual analog scale (VAS) for fatigue, and the 5-item Hopkins Symptom Checklist. Information on demographics, medications, time since last rheumatologist visit, and duration of morning stiffness was obtained. Patients were compared with matched controls (n = 79).
The mean age of patients was 25.1 years and 72% were female. Areas of importance regarding QoL were physical activity (n = 38, 48%), work and school (n = 31, 39%), fatigue (n = 29, 37%), and self-image (n = 26, 33%). Those who noted physical activity as a factor impacting QoL were more likely to report more pain interference, morning stiffness, and were older. Fatigue was linked to current use of disease-modifying antirheumatic drugs (DMARDs). Self-image was associated with pain interference and polyarticular course JIA. However, work/school was not linked to other factors.
Higher PGI scores, which signify better QoL, were positively correlated with all SF-12 subscales except for role emotional. They were negatively correlated with pain interference, pain severity, disability, and morning stiffness. Patients with JIA reported more pain, poorer physical HRQoL, and less participation in full-time work or school when compared with the control group.
Patients were not evaluated by a physician and blood tests were not performed during follow-up appointments, so invaginators were not able to make conclusions based on disease activity. Further, information on comorbidities were not collected, which may have affected a patient’s health and QoL outside of JIA. Finally, basing results solely on patient-reported health and QoL may have impacted over- or underreporting.
“This study reveals important insights on long-term outcomes for young adults with JIA by capturing aspects not included in traditional standardized PROMs,” investigators concluded. “Individualized measures can provide important information on the consequences of JIA in patients’ lives by including aspects of QoL not assessed in standardized measures… Further research should, in addition to standardized measures, include individualized measures to gain more insight and achieve a broader understanding of the effect of JIA on patients’ lives.”
Tollisen A, Selvaag AM, Aasland A, et al. Personally Generated Quality of Life Outcomes in Adults With Juvenile Idiopathic Arthritis [published online ahead of print, 2022 May 15]. J Rheumatol. 2022;jrheum.211245. doi:10.3899/jrheum.211245