Self-image, physical activity affect quality of life in JIA

In young adults with juvenile idiopathic arthritis (JIA), the most common factors said to significantly influence quality of life (QOL) are physical activity, work/school, fatigue, and self-image, reports a study.

“[I]ndividualized measures can provide important information on the consequences of JIA in patients’ lives by including aspects of QOL not assessed in standardized measures,” the researchers said.

In this study, 79 patients (mean age 25.1 years, 72 percent female) completed the Patient Generated Index (PGI) and the standardized measures: Health Assessment Questionnaire–Disability Index, 12-item Short Form Health Survey (SF-12; physical and mental health-related QOL), Brief Pain Inventory (pain severity and interference), 5-item Hopkins Symptom Checklist, and visual analogue scale for fatigue.

The researchers also collected data on morning stiffness, medications, and demographics. They also matched all patients to 79 control participants.

The most frequently reported areas of importance for patients’ personally generated QOL, as assessed by PGI, were physical activity (n=38, 48 percent), work/school (n=31, 39 percent), fatigue (n=29, 37 percent), and self-image (n=26, 33 percent). [J Rheumatol 2022;49:1138-1145]

Nomination of physical activity correlated with older age, morning stiffness, and more pain interference, while that of fatigue correlated with current use of disease-modifying antirheumatic drugs (DMARDs). Nomination of self-image was associated with polyarticular course JIA and pain interference. On the other hand, nomination of work/school did not show any association with other factors.

“Whether patients had difficulty performing a certain activity or problems with the duration or intensity of the activity could unfortunately not be determined by our assessments,” the researchers said.

“The effect of inflammatory arthritis on physical activity has been reported in previous studies on children and adolescents with JIA as well as in adults with rheumatoid arthritis, supporting the findings of our study,” they added. [Arthritis Rheum 2008;59:1379-1384; J Phys Act Health 2012;9:1036-1048]

Higher PGI scores, indicating better QOL, was positively associated with all SF-12 subscales, except role emotional, and negatively with disability, pain severity, pain interference, and morning stiffness. In addition, patients had more pain, poorer physical health-related QOL, and less participation in full-time work/school relative to controls.

“The correlations between the PGI overall score and other assessed variables were moderate or weak,” the researchers said. “This might be due to the heterogeneous way that health problems affect adults with JIA or to the standardized measures omitting questions that are important to patients, which supports the use of an individualized questionnaire.”

In the present study, 17 patients did not answer the PGI. The reasons for noncompletion of PGI were not revealed, but one possible cause was that these individuals were “either more or less affected by JIA than those who did complete the PGI.”

“Despite no difference being found between the 79 participants and the 17 nonparticipants with respect to physical health-related QOL, physical disability, and current use of DMARDs, the participants reported more pain, fatigue, psychological distress, active joints, and lower mental health-related QOL,” the researchers said.

“The experience of more health-related symptoms among the participants may have an effect on the external validity of our results,” they added.

In addition to standardized measures, the researchers recommended the inclusion of individualized measures in future studies to gain more insight and to better understand the effect of JIA on patients’ lives.