JUVENILE IDIOPATHIC ARTHRITIS (JIA)
Juvenile Idiopathic Arthritis (JIA) is a condition that affects approximately 1 in 1000 children under the age of 16 years
Causes of Juvenile Idiopathic Arthritis (JIA)
We don’t know what causes JIA. It may be a combination of environmental and genetic factors.
It is an autoimmune condition, meaning the body’s immune system attacks part of a person’s own body (in this case the joints) creating inflammation where it is not needed. Inflammation of the joints causes them to become swollen, stiff and painful. Any number of joints in the body can be affected.
There are several different types of JIA
- Oligoarthritis – Most common type, often but not always, mild. Affects 4 or less joints.
- Polyarthritis – Affects 5 or more joints, often includes the smaller joints in the hands, toes, wrists, ankles, hips, knees and jaw.
- Enthesitis-related – In addition to the joints, this also causes inflammation and pain where the tendon connects to the bone (this is known as enthesitis). May also affect the pelvis and back.
- Psoriatic – Linked to a skin condition call psoriasis. Often affects fingers and toes. Maybe changes to nails.
- Systemic – Often linked with a fever, rash and generally feeling unwell. Joint signs may come later.
There is no specific test to diagnose JIA. A diagnosis is made if a person has had symptoms for 6 weeks or more, the person is under 16 years old and all other causes have been ruled out.
Symptoms of JIA
- Swollen, stiff and painful joints. Affected joints may be warm to touch and can appear discoloured. Joint stiffness particularly occurs first thing in the morning.
- There will be times when a young person’s condition is controlled and times when there are flares of the condition. Flares are unpredictable and can happen at any time.
- The condition can go into remission but may continue into adult life. It is very difficult to predict the course of the disease in a given individual.
Complications of JIA
- JIA is linked to a condition called uveitis. Uveitis is inflammation in the eye. It is usually asymptomatic in the early stages, but can be sight threatening if left untreated. All children with HIA are regularly screened for this condition.
- Inflammation of the joints can ultimately lead to joint damage which is irreversible. Treatments for arthritis aim to control the symptoms in the short term but also prevent joint damage in the longer term.
Treatments for JIA
- There are many different treatments for JIA. These include:-
- Non-Steroidal Anti Inflammatory Drugs (NSAIDS) – Includes ibuprofen, diclofenac
- Corticosteroids – either orally, intravenously (via a drip over a few days) or directly into the joint by an injection. If oral steroids taken for a long period they can have side effects including putting on weight, cushingoid appearance (round moon face), and mood changes.
- Disease Modifying Anti-Rheumatic Drugs (DMARDS) – help reduce inflammation, includes Methotrexate and Sulphasalazine. Methotrexate – can be given either orally or injection. Some people taking methotrexate experience side effects including nausea. These drugs may take up to twelve weeks to take effect.
- Biologic Therapies – Also help to reduce inflammation and reduce risk of joint damage. These drugs tend to be added in to a young person’s treatment if a DMARD is not being effective enough. There are lots of different typed of biologic drugs and they can be given in a variety of ways including injection or intravenously via a drip.
As noted above, this is a relapsing-remitting condition characterised by exacerbations known as flares. Young people may therefore need support to be put in place at times when their condition is in flare, and less, or even no support at times of good control. The severity of the disease is highly variable and each young person will be affected in different ways and to a different degree. Support for students with JIA therefore needs to be flexible and tailored to the needs of the individual.
Below are some common challenges to consider with suggestions of ways to address them:
Getting round school
- Students may need strategies such as lift passes, time out passes, and access to a locker.
- A toilet pass maybe helpful if the young person experiences any side effects from their medications such as nausea/stomach upsets, or has difficulty mobilising to the toilet.
- It is useful for the young person to have access to a place where they can rest if needed.
- Young people should be allowed to move around the classroom to avoid stiffness.
- It is helpful for all staff to be made aware of the young person’s condition.
- Physical activity is recommended and is encouraged. Young people should try and take part in PE but they may find it helpful to do a slightly shorter session or have a rest during the session. Activities may need to be adapted to suit the young person’s needs, and in the majority of instances this would be preferable to not taking part.
- Mornings tend to be trickier with stiffness being a predominant feature and if possible it can be helpful to do PE at a later time in the day.
- We would encourage integration in PE, and the use of inclusive activities to enable the young person to get the benefits of PE at their own level. If, despite such measures, they are still unable to join in, they may have a physiotherapy home exercise programme they could do within the session.
- Children and young people often report their joints are affected by the cold weather and therefore it may be helpful to wear tracksuit bottoms outside for PE in colder weather or consider indoor options if the weather is especially bad.
- Some children may struggle with fastenings and changing into and out of their uniform and extra time/support maybe needed.
- Some children may struggle to get their footwear on due to swelling and/or the need for insoles. In children and young people with foot and ankle disease, appropriate supportive footwear is often essential to manage symptoms, this may not always be possible within the school uniform guidelines and therefore, alternative supportive footwear should be allowed.
- Pass to go to the front of the queue if prolonged standing difficult
- May require help with carrying school tray. In some cases adaptive cutlery maybe used.
- A young person may require extra exam measures, particularly if hands and/or wrists are affected.
- Untimed rest breaks, extra time, use of a laptop or scribe can be considered. These measures should be discussed with school and put in place through the exam board if required.
- Prolonged handwriting can be painful if the hands and/or wrists are affected.
- Young people may benefit from use of a laptop, or scribe.
- Where possible if handouts can be given to minimise the amount of writing this can be helpful.
- Young person may find a chunkier pencil/pen easier to use.
Absence from school
- Young people may have several hospital appointments to attend.
- Some of the treatments may require a regular day at the hospital for an infusion and this can affect school attendance.
- Young people are often keen to have work to do when not at school to prevent them falling behind in their studies and it is useful to establish a way of ensuring how to get the work to them.
- Young people may require pain relief medication at school which enables them to stay at school rather than get sent home.
- Some medications affect the young person’s immune system and therefore parents may need to be informed of any cases at school of illnesses such as chicken pox.
- Some conditions and medications mean the young person is more susceptible in the sun and suncare precautions are needed.
- Living with a long term health condition can have an effect on a young person’s mood and how they see themselves. Prolonged absences can cause difficulty with peers and friendship groups.
- Young people often report a lack of understanding by others (both peers and staff), particularly as the condition is often not visible. Flares are unpredictable and therefore a young person may appear fine one day but struggle the next. We do not know what causes a flare but sometimes they can be triggered by stress.
- Sleep can be affected due to pain and discomfort. Many young people report fatigue and difficulty with concentration at school.
- It is useful for the young person to know who they can talk too if they are having any issues at school.
- It is worth discussing any forthcoming school trips with the young person/parents prior to the trip to ensure the person is going to manage. Rest breaks may need to be incorporated into the day.
Comprehensive information from a leading arthritis charity including a section with information and advice focused on the needs of young people
Information on Juvenile idiopathic arthritis, what it is, how it’s managed and living with the condition. Including information for those working in schools.
CCAA is a charity supporting children with Juvenile Idiopathic Arthritis (JIA) in England and Wales. The charity is run by a group of volunteers who have been affected by the condition through personal experiences. The site has useful resources for those working in schools, including a model Individual Healthcare Plan (IHP).
- This leaflet was developed from findings of a study funded by the Bath Institute for Rheumatic Diseases (BIRD) which examined the experiences of teaching staff who support a child with JIA within school.
Many thanks to Catherine Dunbar, Advanced Occupational Therapist at Sheffield Children's NHS Foundation Trust for writing this section.