Transition into the Adult World
Outcome of JIA
Many young people with JIA (estimated to be at least 2/3) will need ongoing treatment into adult years. Improved medical management of JIA has resulted in many patients being well with good disease control and transferring to adult care often on complex regimens including biologics and methotrexate. There is reduced need for orthopaedic intervention nowadays as treatments are more effective; however if required there can be challenging complications such as intubation being difficult with cervical spine disease or temporomandibular joint disease and osteoporosis.
Adolescence is a challenging time of physical, psychological and emotional changes. Young people need support at a time when they are planning their future, developing relationships and taking on responsibility to achieve independence away from the family home. Chronic illness can delay puberty and the growth spurt of adolescence. Medications can cause adverse effects, which may affect self-esteem and body image; for example, corticosteroids can exacerbate acne and growth retardation. Methotrexate poses lifestyle restrictions, such as alcohol intake. Chronic diseases can be isolating, and anxiety, despondency, and poor adherence with medication and physical therapy are not uncommon.
Transition is ‘the purposeful, planned movement of adolescents with chronic physical and medical conditions from a child-centred to an adult-orientated healthcare system’, but also includes the transition from school to the workplace/higher education and also from home to independent living.
Transitional care includes disease-specific, generic adolescent and mental health issues.
There is guidance on transitional care. Evidence suggests that good transitional care leads to improved outcomes.
- The Department of Health, England has set out clear quality criteria for adolescent-centred health services, - ‘You’re welcome’; key themes include accessibility, staff training, encouraging shared decision making and confidentiality.
- ‘HEADSSS’ is a helpful mnemonic for generic health issues including Home, Education, Activities, Drugs, Sex, Sleep and Suicide.
- Ready, Steady, Go - guidance on readiness for transfer to adult rheumatology
- Websites for patients to promote knowledge and self management and peer support for young people