Nurses are integral to transitional care and function as transition co-ordinators to help breach between paediatric, adolescent and adult services.
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.
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 starts early (from the age of 11 years), through transfer (usually 16-19 years) and continues into young adult years (up to 25 years). Transitional care needs to include generic health, mental health, disease specific issues and enable young people to develop self-advocacy and communication skills so that they can function independently. Parents need help and support to ‘let go’.
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.
The ideal outcome of transitional care is that the young person is able to be assertive and communicate concerns to health care teams, take personal responsibility for their care and they are more likely to be independent young adults in the community.
There are many resources to support health care teams to set up and deliver transitional care clinics. These include:
- Transitional care consultation guidelines and HeADSSS assessment covering generic health issues - from Starship Hospital, Auckland, New Zealand.
- Ready, Steady, Go - guidance on readiness for transfer to adult rheumatology.
- Royal College Nursing guidance on transitional care and links to RCN resources.
- Systematic review evaluating the effectiveness of interventions designed to improve the transition of care for adolescents from paediatric to adult health services.
- Supporting mental health for young people.
- Arthur's place - an online magazine and support for young people with JIA.
- Communication skills with young people.