RA and JIA Consumer Care Guides

Travel guidebooks are great for planning journeys and learning about points of interest along the way. Have you ever wished you had a guidebook to help you manage your arthritis at different life stages?

Great news. Arthritis Australia, in collaboration with the Australian Rheumatology Association (ARA), has recently launched consumer guides to help people navigate life with two prevalent forms of autoimmune arthritis, rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA). Both resources were co-designed by people with lived experience of these conditions.

What is Autoimmune Arthritis?

The immune system plays a crucial role in protecting the body from harmful invaders (antigens), such as viruses, bacteria, fungi and other foreign substances. Autoimmune diseases occur when the immune system mistakenly damages healthy cells in the body. These conditions cannot be cured but they can be well-managed with appropriate treatment. Autoimmune arthritis is the term given to conditions that primarily attack the joints and surrounding tissue.

Rheumatoid arthritis affects half a million Australian adults (456,000). It occurs when the immune system attacks the lining of the joints, causing them to be inflamed, stiff and painful. Rheumatoid arthritis can strike at any age, although it usually begins between the ages of 40 and 60. It is more common in women than men.

Juvenile idiopathic arthritis is estimated to affect 30,000 Australian children and young people. It refers to a group of chronic rheumatic conditions found in children and adolescents with an onset before age 16. JIA causes inflamed, swollen joints and in severe cases, eye inflammation (uveitis).

About the RA and JIA Consumer Care Guides

Health professionals have clinical practice guides to help them diagnose and manage a wide range of conditions. Yet, the level and quality of information about such conditions given to people living with them can often be inconsistent or insufficient.

When people are diagnosed with rheumatoid arthritis they are often plunged into a world they know little or nothing about. They are likely already dealing with pain and fatigue so the idea that RA is for life can be very frightening. Children with JIA, and their families, face similar issues. While young children with JIA may not remember life without it, older children might struggle to understand what is happening to them. Of course, every parent or carer wants nothing but a healthy and happy life for their child so a JIA diagnosis can initially feel like an end to their hopes and dreams.

Although health professionals generally share good information about the symptoms and treatment of RA and JIA, many don’t have much holistic advice on how to live with the condition day-to-day.

That’s where the RA and JIA Consumer Care Guides come in. They include summaries of the conditions and standard treatments plus practical information that may not be addressed in medical appointments. These free guides can be downloaded from the Arthritis Australia website.

The RA Consumer Care Guide includes:

  • An overview of how RA affects people at different stages of life (including family planning and pregnancy) and what to expect from your healthcare team at each stage. This helps to reduce the fear of the unknown.
  • Tips to help you communicate your preferences and needs with your health professionals, family and friends, employers and others. This guide also includes suggestions on what to do if you feel your needs are not being met.
  • Tips for optimal self-management, such as staying active, managing your medications and dealing with pain.

If you are a parent or carer of a child with JIA, the JIA Consumer Care Guide can help you:

  • Understand the terminology related to JIA and participate in healthcare decisions for your child.
  • Explore options to best support your child at different ages and disease stages.
  • Know what to do when your child has a flare-up or is otherwise unwell.
  • Provide emotional support for your child to help them understand their condition and its management.
  • Support your child as they transition to adult care.

Both guides include information on available financial and community support plus links to other helpful resources. Above all, they empower people to advocate for the best quality care throughout their disease journey and achieve the best possible health outcomes.

Rheumatoid Arthritis Clinical Care Standards

While the JIA and RA Consumer Care Guides were being developed, the Australian Rheumatology Association also developed the inaugural Rheumatoid Arthritis Clinical Care Standard to help improve the diagnosis and management of RA.

Learn more about the evolution and benefits of this important document in our article, Australia’s First Clinical Care Standard for People with Rheumatoid Arthritis.

The Australian Rheumatology Association is currently revising the Standard of Care for Juvenile Idiopathic Arthritis in Australia.

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