JIA Consumer Care Guide

MEDIA RELEASE
Resources launched to alleviate increasing shortfall in arthritis care.

• Comprehensive care resources set best practice benchmarks to help empower patients to advocate for better management of their disease
• Arthritis community being ‘left in waiting rooms’ with shortfalls of 302 adult and 41 paediatric rheumatologists

 [Canberra, Australia] – Arthritis Australia is launching first of a kind resources to equip those living with rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA) to navigate the management of their diseases against best practice care standards and minimise the impact of shortfalls in clinical care – notably serious shortages of rheumatologists and other rheumatology health professionals.

The new resources, created in collaboration with The Australian Rheumatology Association (ARA), involved a comprehensive codesign process with those living with RA and JIA to ensure they reflect lived experiences and critical unmet needs. They have been funded by Federal Government.

“Nearly half a million Australian adults (456,000) are living with RA – our most common form of inflammatory arthritis.^[1] Juvenile arthritis is estimated to affect 30,000 Australian children and young people.^[2] Both conditions are serious, painful autoimmune diseases and we need to ensure these communities are better equipped to advocate for their care, given they are facing longer waits to access care with our current rheumatology workforce shortage and face other barriers including cost,” said Jonathan Smithers, Chief Executive officer of Arthritis Australia.

In children, JIA has the potential to cause joint deformities and loss of vision if not diagnosed early and treated effectively.^[3] Many adults living with RA have major impacts on their ability to work and their caring responsibilities, and are also living with comorbidities including back problems (36%) or mental health and behavioural conditions (35%) compared with people not living with RA (25% and

22%).^[4] The most recent data shows 380 adult, and 20 paediatric rheumatologists are working in Australia – but to meet demand, there should be 682 adult and 61 paediatric rheumatologists. Additionally, 38% of rheumatologists surveyed were planning to reduce their hours within 12 months according to the recent ARA workforce report.^[5]

“The current shortfall of 41 paediatric rheumatologists means many children are seeing adult specialists, despite the diseases having several differences, including impacting different systems of the body. It’s leaving parents with children in adult waiting rooms, and while our adult rheumatologists are doing their best to fill the gap, specialist paediatric expertise is needed to address the unique challenges and symptoms these young patients face,” says Dr Claire Barrett, President of the Australian Rheumatology Association.

“We felt it was absolutely critical to step in now and give families battling juvenile arthritis and adults managing RA the best possible roadmaps showing the standard of care they need to keep their diseases well managed – and have better health outcomes ahead of them,” she adds.

In addition to the Care Guides, the first ever Australian Clinical Care Standards for RA in adults have been developed and published by the ARA. Prior to this, rheumatologists lacked established clinical standards, leaving both healthcare professionals and patients without clear parameters and benchmarks in place.

The Standards seek to improve early diagnosis of RA and its management in adults. The focus is on 12 areas of care where improvements can be expected to lead to better health outcomes and an improved quality of life for those living with the disease.

“The reality with the current shortfall in specialists is many people struggle to get to a rheumatologist once diagnosed. The standard is only a 4 week wait – current wait times for adults with RA to see a specialist for the first time vary across the country but many wait at least three to six months. Wait times for children to see a paediatric rheumatologist are also a major concern, often leaving a significant delay in the critical early days of care and this is just not acceptable,” adds Jonathan Smithers, Arthritis Australia CEO.

The new care resources empower consumers with the knowledge to actively manage and advocate for their care, including accessing team based care from healthcare professionals including physiotherapists, GPs, and psychologists.

JIA Care Guide: Parents of children with JIA juggle multiple caregiver roles, addressing both JIA symptoms and the broader impacts on schooling, emotional wellbeing and family finances. The Care Guide provides a wealth of information to empower them on the management of the disease, expected care, advocacy for their child, school support, financial assistance, etc., guiding them step-by-step on their journey.

RA Care Guide: This brings a new depth of knowledge on RA to help those living with the condition advocate for their care – including details of the treatment journey, pain management, exercise, diet, co-occurring conditions, emotional wellbeing, and how to utilize every resource available to them.

About Arthritis Australia

Arthritis Australia is the peak national body for arthritis, advocating on behalf of over 3.6 million Australians living with arthritis, and working with many other arthritis organisations to deliver information and support to people living with more than 100 types of arthritis and musculoskeletal conditions. We are a leading non-government funder of arthritis research in Australia and advocate for policies, programs and funding initiatives that will improve the health and wellbeing of people living with arthritis.

For more information visit: arthritisaustralia.com.au 

About the Australian Rheumatology Association (ARA)

The ARA’s purpose is to give the best possible care for people of all ages with musculoskeletal and inflammatory conditions. It fosters excellence in the diagnosis and management of musculoskeletal and inflammatory conditions through training, professional development, research, and advocacy.

For more information visit: rheumatology.org.au

Issued by Cube on behalf of Arthritis Australia. For more information, please contact: Anne-Marie Sparrow on 0417 421 560 or Camilla Toft on 0406 698 662.

Available for interview:

• Jonathan Smithers, CEO, Arthritis Australia
• Dr. Claire Barrett, President of the Australian Rheumatology Association
• Professor Catherine Hill, Clinical Rheumatologist and Epidemiologist, University of Adelaide

[1] https://www.aihw.gov.au/reports/chronic–musculoskeletal–condions/rheumatoid–arthris 

[2] https://www.aihw.gov.au/reports/chronic–musculoskeletal–condions/juvenile–arthris

[3] https://www.jafa.org.au/about/juvenile-arthris/

[4] https://www.aihw.gov.au/reports/chronic–musculoskeletal–condions/rheumatoid–arthris 

[5] Australian Rheumatology Association, ARA Rheumatology Workforce Report, February 2023