Adolescence is defined broadly by the changes that occur (physical, psychosocial and developmental) from the age of 11 years into young adult years (25 years).
Adolescence is a challenging time of physical, psychological and emotional changes.
Young people, irrespective of whether they have chronic illness or not, 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.
Many young people with chronic rheumatic disease, such as Juvenile Idiopathic Arthritis (JIA) or Juvenile Systemic Lupus Erythematosus (JSLE), will need ongoing care into adult years. Improved management has resulted in many patients transferring to adult care often on complex immunosuppressive regimens.
Chronic illness can have an adverse impact on the physical changes of adolescence (e.g., delayed puberty and growth spurt) and can be isolating with anxiety, despondency, and poor adherence with medication and physical therapy.
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.
There are often worse clinical outcomes for young people with chronic illness; in particular for those who do not have access to, or do not engage in transitional care programmes. The reasons for worse outcomes are multiple but include lack of appropriate services with trained health care professionals and being lost to follow up.
Transitional care attends to medical, psychosocial and educational / vocational needs of adolescents as they move to adult centred care. Transfer is ‘handover’ to adult practice and may involve change to a different hospital, different town or city, and different health care teams.
The ideal outcome of transition is that the young person is able to be assertive and communicate concerns to health care teams, take personal responsibility for their care and are more likely to be independent young adults in the community.
The EULAR / PReS 2016 recommendations for transitional care in rheumatology emphasise the importance of communication, flexibility for different model of care, transition co-ordinator roles and staff training to facilitate the optimal outcomes for young people. Evidence suggests that good transitional care leads to improved outcomes.
Practical advice about transitional care is available in PMM-nursing.