Pos0770 caregiver burden in indian juvenile idiopathic arthritis patients: a single hospital-based study

Background Caring for a child with juvenile idiopathic arthritis (JIA) negatively impacts caregivers. There are no studies on caregiver burden in JIA from South Asia. Objectives To assess the caregiver burden in children with JIA from India. Methods We conducted this observational study in a Tertiary care center in North India. We translated and culturally adapted the CAREGIVER QUESTIONNAIRE[1] into Hindi and administered it to 145 caregivers of JIA patients age ≤ 18 years from November 2021 to December 2022. We collected their socio-economic data, clinically examined the child and reviewed their clinic records for disease characteristics including activity and damage. The Juvenile Arthritis Multidimensional Assessment Report was used to assess the physical function and health related quality of life. The CAREGIVER QUESTIONNAIRE was scored[2] to determine impact in various domains. Results One hundred and forty-five caregivers participated with median age of 39 (32-45) years. This included 68 (47.9%) fathers, 34 (23.4%) mothers, 22 (15.2%) brothers, 18 (12.4 %) uncles and 1 (0.7%) sister, grandfather and grandmother. The JIA patients had median age of 15 (12-17) years and the male: female ratio 2.4:1. Enthesitis related arthritis was the predominant subtype (65.5%) followed by systemic onset JIA (11.7%), RF+ polyarthritis (9.0%), RF- polyarthritis (6.9%), oligoarticular JIA (6.2%) and extended oligoarticular (0.7%). Majority (69.7%) expressed sadness at diagnosis, and one fourth (28.3%) continued to express sadness. Half (53.4%) of the caregivers neglected their health and one tenth (9.7%) became sick. Two thirds (64.8%) had to borrow money to meet the expenses. Emotional impact scored 12.9 ± 2.3 (range 4-18). Social impact scored 6.1 ± 1.9 (range 2-9), economic impact 2.6 ± 1.0 (range 0-5), labour impact 7.0 ± 4.2 (range 0-15), family impact 6.8 ± 1.6 (range 4-16) relationship impact 0.6 ± 0.5 (range 0-0.8). Impact on spirituality was 0.9 ± 0.6 (range 0-5) and impact of social networks was 0.8 ± 0.8 (min= 0, max=8). Total score was 37.8 ± 9.2 (range 10-84). Conclusion JIA has significant emotional, social, economic and labor impact on caregivers. Social support needs to be given to caregivers for caring for children with JIA. References [1]Torres-Made MD, et. al. Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers. Pediatr Rheumatol Online J. 2020 Jan 14;18(1):3. [2]Fortuna-Reyna BJ, et. al. Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children. Pediatr Rheumatol Online J. 2021 Mar 17;19(1):30. Acknowledgements: NIL. Disclosure of Interests None Declared.