The IMPACT Study: Investigating the Mental, Physical And social Costs of juvenile idiopathic arthritis (JIA) and childhood rheumatic diseases (CRDs), was commissioned by JAFA and undertaken via an anonymous national online survey in 2023 by researchers from The University of Sydney. Focusing on 0-25yr old Australians with JIA or a related CRD and their families, The IMPACT Study represents the first comprehensive investigation of the personal and financial cost of these diseases. Selected headline results indicate that:
Children and young people with JIA and CDRs:
- Take 11 to 14 months respectively to get diagnosed
- Have poor quality of life – worse than a range of other chronic diseases
- Suffer a high burden of medication side effects – mainly related to taking methotrexate
- Average 25 to 26 visits per year respectively to a range of health professionals
- Students miss an average of 2.6 (12%) to 3.1 (15%) of school days per month respectively.
Annual financial costs estimated in Australian dollars for 2022 were:
- JIA $28,688 per participant made up of:
- government health care costs: $24,396
- participant out of pocket costs: $4,292
- CRD $35,368 per participant made up of:
- government health care costs: $31,189
- participant out of pocket costs: $4,179
The results provide a sound evidence base for future health policy, planning and decision making and a valuable guide for further research. The IMPACT Study represents another milestone in the history of JIA and related CRDs in Australia, and another step towards JAFA’s goal of generating evidence to raise awareness of the plight of children and young people with these diseases.
JAFA is grateful to Adrian and Charlotte MacKenzie and Five V Capital for their generous donation which made the IMPACT Study possible.
