Psychosocial outcomes and health status of adults who have had juvenile rheumatoid arthritis. A controlled, population‐based study

Abstract

Objective. The goal of this study was to evaluate the physical and psychosocial impact of juvenile rheumatoid arthritis (JRA) among a population‐based cohort of adults who had the disease during childhood, compared with a control cohort of subjects with no history of JRA. Methods. The Rochester Epidemiology Project database was used to identify all cases of JRA (based on the American College of Rheumatology [formerly, the American Rheumatism Association] 1977 criteria) among Rochester, Minnesota residents first diagnosed between January 1, 1960 and December 31, 1993. Controls were age‐ and sex‐matched to the cases as of the date of diagnosis of JRA. A pretested postal survey was mailed to all adult cases (whose date of birth was before December 31, 1975) and matched controls from the same population, to obtain information on socioeconomic issues and functional status (using the Health Assessment Questionnaire and the Health Status Questionnaire). The complete medical records of all cases and controls were reviewed to obtain information on demographics and clinical manifestations of JRA. Results. Of the 50 eligible cases, 44 (88%) responded to the survey. There were 102 age‐ and sexmatched controls (2–3 per case) who responded to the survey. Seventy‐three percent of the cases had pauciarticular‐onset JRA, 16% had polyarticular‐onset JRA, and 11% had systemic‐onset JRA. Average followup was 24.7 years and 24.5 years after the index date for cases and controls, respectively. Greater disability (P = 0.0002), more bodily pain (P = 0.0002), increased fatigue (P = 0.0112), poorer health perception (P = 0.0004), and decreased physical functioning (P = 0.0002) were reported by the cases compared with the controls. JRA cases reported significantly lower rates of employment (P = 0.015) and lower levels of exercise (P = 0.0002) than did controls. Level of educational achievement, annual income, health insurance status, and rate of pregnancy and childbirth were similar for both cases and controls. Conclusion. Adults who have had JRA during childhood experience long‐term physical and psychosocial impairment.

Proxy‐reported health‐related quality of life of patients with juvenile idiopathic arthritis: The pediatric rheumatology international trials organization multinational quality of life cohort study

“…A significant relationship between clinical depression and anxiety on psychological testing and the degree of disability was found by David et al (27). In a populationbased study, Peterson et al (28) reported that their JIA cohort perceived poorer health, less energy, more bodily pain, and more limitation in physical functioning compared with healthy children. Foster et al (29) recorded significantly worse scores than healthy controls in all physical scales and in the emotional role scale of the HRQOL measure in adults who had JIA.…”

Educational and occupational outcomes among young adults with juvenile idiopathic arthritis

“…Although it has often been assumed that children outgrow JIA, recent evidence has indicated that many children have recurrent disease into adulthood and long-term physical symptoms vary widely (2)(3)(4)(5). While some adults with JIA have reported few problems, others have noted reduced physical functioning, vision problems, greater pain, more fatigue, and poorer overall health compared with individuals without the disease (2,(5)(6)(7)(8).…”

“…Although youths with arthritis may be at risk for internalizing symptoms (9), multiple studies have suggested that they generally do not have severe or lasting psychopathology (10 -14). As a result, research has focused on developmental milestones or life goals as more subtle indicators of functioning (5,8,15). A primary milestone for youth is the transition out of high school into training and education for a future occupation.…”

“…Despite functional limitations, adults with JIA have similar or higher graduation rates (8), years of education (6,7), and postgraduate degrees (2,6,15) compared with those without the disease. Interestingly, early research has indicated that children with more severe arthritis may have greater school absenteeism (18 -20), but attendance typically has not been compared with healthy classmates.…”

“…Higher unemployment rates have been noted among adults with JIA in relation to local averages (2,6,15) and comparison groups (7,8). One study found that a significantly greater proportion of adults with JIA received disability or unemployment compensation, and a significantly smaller proportion were either in school or working compared with peers (7).…”