Juvenile idiopathic arthritis at school: who understands?

Published: 25 Oct 2018

Thanks to The Lancet for featuring JIA-at-NRAS in their prestigious general medical journal. Helen, who is Mother to Tasmin who has Juvenile Idiopathic Arthritis (JIA) and our Youth and Family Services Manager, Anne contributed to this article that featured in the Lancet.

 The Lancet is a weekly peer-reviewed general medical journal. It is among the world's oldest, most prestigious, and best known general medical journals. 
Source: The Lancet

“I remember being chastised on more than one occasion for pushing my son around in a pram because he was ‘too old for a buggy’. I wasn’t going to tell a stranger he had inflamed joints… My kid has what’s called systemic-onset juvenile idiopathic arthritis (sJIA), which is the rarest form and can have the greatest impact.” Annabel and her son Lucien have had to adjust to the painful realities of a condition that is rarely talked about and barely visible to the eye. Formerly known as systemiconset juvenile rheumatoid arthritis and Still’s disease, sJIA is a type of juvenile idiopathic arthritis (JIA) with extra-articular manifestations, such as fever, rash, and inflammation of the organs. Annabel talks about how the developmental and behavioural changes you expect to see in your child are “turned upside down”, and about the “alarming” nature of an illness that can attack young bodies so drastically: “It can shrink their world—making it difficult to go to school, to socialise, to grow in the largest sense.”

Why might people not know about an illness that can affect children as young as 3-year-old Lucian with such debilitating consequences? One interpretation is that JIA is not as prevalent as other chronic childhood diseases. Anne Gilbert, Youth and Family Services Manager at JIA-at-National Rheumatoid Arthritis Society (NRAS, Berkshire, UK), says that although JIA may cause fewer fatal emergencies than other diseases, such as asthma, epilepsy, and diabetes, it is not uncommon. There are approximately 15 000 individuals younger than 16 years with JIA across the UK. It could also be, as Gilbert explains, because “there is no one pathognomonic feature [so] it is often a diagnosis of exclusion and is not an acute presentation”. By contrast, Perthes disease, testicular torsion, and meningococcal septicaemia are all emphasised in medical teaching because early detection rapidly affects prognosis. This is less so with JIA. It is uncommon for a primary health professional to consider JIA on presentation of swollen sore joints. “Traumatic soft  issue injury or transient post-viral arthritis are more common than JIA, and some patients are falsely reassured or dismissed at initial presentation”, says Gilbert. Another obstacle is the confusion around terminology and the misconception that JIA is a childhood version of rheumatoid arthritis. Andrea Ring, Senior Director of JA and Young Adults at the Arthritis Foundation (Atlanta, GA, USA) offers a similar viewpoint: “the impact of arthritis can be invisible and the complexity of childhood rheumatic diseases requires the expertise of a paediatric rheumatologist or adult rheumatologist with experience [in] treating children”.

Informing people is the keystone to raising awareness and reducing alienation and stigma felt by children with JIA and their families. As Ring explains, “[JIA] affects joints and/or organs and can be very painful. It is unpredictable and could really hurt in the morning and [patients may] feel better by the afternoon. There is no cure and it is not contagious. JIA is an invisible disease that can make it difficult for the child to walk, carry books, hold a pencil, and be physically active.” Ring identifies lack of awareness and understanding of JIA on physical and mental ability as the main barrier to adequate provision of support for children. To overcome these barriers, she recommends increasing the children’s and parents’ knowledge of educational rights and self-advocacy skills, improving responsiveness of school administrators and staff within institutional framework, and implementing stricter laws that leave no room for interpretation.

Understandably, the school environment is crucial for children with JIA to feel supported; the teachers and staff need to be properly informed about the symptoms and the problems associated with the illness. Gilbert points out that children and adolescents will often feel isolated because of the unpredictability of JIA and are likely to feel excluded frompeer-play or social activity. “Many young people with JIA have not been able to forge strong relationships in school”, she says, and recommends provision of emotional support in the early stages following diagnosis. Unsurprisingly, the reality of long waiting lists and the stigma around mental health mean access to services is not always available or accepted. Ring adds there is “evidence for effectiveness of biofeedback therapy, exercise [such as yoga and tai chi], and meditation in adults for arthritis”; however, these have not been evaluated in children with JIA.

So what support can children and adolescents with JIA expect in their schools? Mirjam Kepic—President of European Network for Children with Arthritis (ENCA), an informal network for national associations that work with children and young people with paediatric rheumatic diseases and their families—tells The Lancet Child & Adolescent Health that “children don’t want to admit that they feel sick…they want to be the same as their peers, they don’t want to be different”. She adds that “the first [step] is to create awareness”, a goal shared with Gilbert and Ring. The differences between countries is huge “because every country has their own health-care system and their own laws”, Kepic says. But with no guarantee of awareness, recourse to legal provision is important. Disappointingly though, in England, following a survey by The Health Conditions in Schools Alliance, Gilbert reports that a “very small percentage of schools, 1 in 10, were meeting their legal obligations to ensure that all schools have a medical conditions policy”. Schools are failing their students, with a variety of factors contributing to this failure. For example, the Education, Health and Care plan, which outlines an individual’s special educational needs, is not a given for children with JIA and the application process can take many months.

In the USA, federal laws apply to  educational environments: equal opportunity is enforced by the Individuals with Disabilities Education Act (IDEA), and civil rights laws, incorporating the 504 plan, exist to protect people with disabilities against discrimination. IDEA covers academic performance and the 504 plan specifies how “to eliminate environmental and functional barriers to education and setting”, explains Ring. However, across states and across the private and public sector there is inconsistent policy—a situation that is not exclusive to the USA. Kepic has done extensive research in Europe. She sees a difference between eastern and western Europe, mainly because of economic development, and offers two strong examples of countries that are ahead in finding solutions. Belgium have state-funded Bednet, a programme that allows sick children to connect to their classroom online, and the Netherlands have the Klassecontact system, where a “buddy” of the child sets up a “classmate”, a mobile video–audio unit that can be controlled via a mouse so the child can feel part of the lesson whether at home or in hospital. Kepic upholds Israel’s progressive response offering immediate treatment and awareness training for teachers, as well as  encouraging strong relationships between parent and school. Ireland have carried out some research in the country, with fairly positive results around recognition of support and information, and a strong presence of occupational therapy for children with JIA. Kepic recognises a common problem encountered across all members of ENCA—a lack of familiarity in schools with JIA, leading to misjudgement of a child’s condition, causing that child further physical and emotional distress and pain. Italy has a particularly poor record with socialisation and stigmatisation; Greek schools are lacking in medical support; Denmark’s existing law does not work well in practice; Germany reports discrimination from peers and lack of belief from staff; and France is struggling to identify the disease and lacks tolerance for long absences from school. Kepic notes that eastern Europe has fallen far behind. In her native Slovenia, the “understanding is zero”; Latvia and Estonia have joined the ENCA but currently do not have any active organisations. Some solutions she has put forward are improving accessibility to the classrooms, employing school nurses, independent mediators to represent the family, training and literature in schools, laptops for home use with a set of books at home and school, peer-to-peer awareness using age appropriate formats, and extra tuition and extra time for homework and exams. ENCA wants to implement a minimum standard of requirements for every country: an information leaflet, a doctor’s letter to the school, a double set of books for home and school, a laptop, and the option to type rather than write in lessons and exams. They also suggest creating a presentation to inform and educate school employees, having access to a psychologist, and if possible time extensions for school work.

Along with webinars, videos, and other educational materials, the Arthritis Foundation has launched a number of “behaviour-change and knowledge-enchancing juvenile arthritis programmes, resources, and events”, Ring says, mentoring programme iPeer2Peer. NRAS has produced two well received booklets about JIA, their Facebook page has around 1700 followers, and more than 1500 users are active on the #wearpurpleforJIA campaign website. ENCA runs an annual video challenge, Fun with JIA, where children can share their experiences of living with JIA and overcoming limitations of the illness. At the PreS congress in September, 2018, ENCA presented a new awareness campaign for World young Rheumatic Disease (WORD) day, which will be on March 18, 2019. “[12 years ago,] I thought I was the only one in the whole world whose child had rheumatism. Now it is different. Slowly we are progressing”, said Kepic. Country-specific recommendations accounting for resource and means are on the table. In the UK, The Health Conditions in Schools Alliance, of which NRAS is a member, has been lobbying for change and a review of the statutory guidance supporting pupils with medical conditions, including the requirement that schools publish medical conditions policy on their website. ENCA is also planning to “reach out to decision makers in the EU parliament” to enact legislative changes. But first and foremost, it all starts with awareness.

Jules Morgan

Source: The Lancet