Pediatric Rheumatology Online Journal → June 2003 → Health-Related Quality of Life, Disease Activity and Outcome Assessments→ Abstract #27

QUALITY OF LIFE AND IMPACT OF THE DISEASE ON PRIMARY CAREGIVERS OF PATIENTS WITH JUVENILE RHEUMATOID ARTHRITIS

A. Bruns,¹ M. O. Hilario,² M. F. Simoes,¹ A. J. Moraes,³ C. A. Silva,³ J. Natour.¹

¹Division of Rheumatology - Department of Medicine, Universidade Federal de Sao Paulo - EPM, Sao Paulo, SP, Brazil; ²Pediatric Rheumatology Unit - Department of Pediatrics, Universidade Federal de Sao Paulo - EPM, Sao Paulo, SP, Brazil; ³Pediatric Rheumatology Unit - Department of Pediatrics, Universidade de Sao Paulo, Sao Paulo, SP, Brazil

OBJECTIVES: To measure the quality of life (QOL) and the impact of the disease on primary caregivers of patients with juvenile rheumatoid arthritis (JRA).
METHODS: Forty patients with JRA and their respective caregivers were interviewed. Clinical and demographic data were collected. QOL was assessed using the following instruments: CHAQ, SF-36, Psychiatric Screening Questionnaire (SRQ-20), and pain scale (VAS). The impact of the disease on the caregivers was measured by the Caregiver Burden Scale (CB Scale).
RESULTS: The type of onset of JRA was systemic in 47% of the patients, poly in 28%, and pauci in 25%. Mean ( SD) duration of disease was 5.1 0.6 years. Mean CHAQ and VAS scores were 0.6 0.7 and 1.7 2.1, respectively. Most caregivers were women (87.5%), married (80%), mothers (93,7%), mean age 36.6 years, and of low educational and socioeconomic level. Psycho-emotional disorders measured by the SRQ-20 were detected in 32% of the caregivers. Pain and mental health were the most affected items in the SF-36. The mean score of total impact measured by the CB Scale was 1.5 0.4. The CB Scale was positively correlated with the SRQ-20 (r = 0.6 and p = 0.0001) and negatively correlated with family income (r = 0.4 and p = 0.128) and mental health (r = -0.65 and p0.0001), emotional aspects (r = -0.5 and p = 0.0011), social aspects (r = -0.5 and p = 0.0003), and vitality of the SF-36 (r = -0.4 and p = 0.0040). There was no significant correlation between the CB Scale and the remaining domains of the SF-36, number of limited joints, VAS, mean duration of the disease, or CHAQ. There was no difference in mean values for the CB Scale between the onset and evolution subtypes of JRA.
CONCLUSION: Although there are no data in the literature to compare our results, we believe that in the present sample the physical aspects of the patients had a lower impact on the QOL of the caregivers than the emotional aspects of the latter.