“When shifts and transitions in life shake you to the core, see that as a sign of the greatness that’s about to occur.”
One way or another, we’ve all been there. Moving from primary to secondary school. Moving from college to university. Starting a new job. Joining the property ladder. Getting married. Starting a family. Entering into retirement. I want you to find those memories, and remind yourself of how you felt when that change occurred in your life, and how you managed to transition into the next chapter of your journey.
Without doubt, you’ll remember a mixture of positive and negative feelings. You may have had excitement about the adventures ahead; the new things you were going to do. However, these may have been clouded by those feelings of uncertainty – of venturing into the unknown, outside of your comfort zone. Letting go of what you’ve loved… of the people around you. Now, remember those feelings and put yourself in the shoes of a young person, who has lived with a chronic condition throughout their childhood. At a point in their teenage years, these young people will need to move from a paediatric to adult healthcare environment – letting go of the family-friendly environment which they’ve been used to, and the people who they’ve gained trust in. Imagine how incredibly difficult this is.
Transition in healthcare
In the context of adolescent healthcare, transition is defined as:
“The purposeful, planned process that addresses the medical, psychosocial, educational and vocational needs of adolescents and young adults with chronic mental and physical conditions, as they move from child-centred to adult-oriented health care systems.”
As young people grow up into adulthood, a set of tools are developed to cope with this new situation. Such a transition is a period of biological, social, and emotional change, in which young people have four major tasks:
- To consolidate identity;
- To achieve independence from their parents;
- To establish adult relationships outside the family;
- To find a vocation.
Young people with chronic diseases; however, have additional tasks to deal with:
- They have to cope with their health condition(s);
- The treatment and its functional limitations;
- They have to learn to do that independently from the support team which was available to them in their childhood, for example, parents and paediatric health professionals.
Learning to live with a chronic condition is difficult enough – managing the physical and psychological implications is a challenge for everyone, regardless of age. For young people, this can be ten times more difficult. Add in the complexity of healthcare systems, which are difficult to navigate, and things can seem impossible to manage. Indeed, a common cause of complaint and unhappiness is the cultural barriers that exist in healthcare systems divided by specialities and service provisions – paediatrics and adult. Rheumatology, dermatology and all of the other disease groups. Secondary care in hospitals, primary care in general practices. A review by Professor Sir Ian Kennedy in 2010 called for discrete funding and a shift in focus towards the needs of young people, away from ‘bureaucratic barriers’ between paediatric and adult care, highlighting this as a critical area for service improvement, as existing abrupt transfers are failing to meet the needs of young people.
Changing cultures and practices in complex healthcare systems, such as the National Health Service in England, is no easy task. However, as individuals and teams, we can, and are influencing changes by asking different questions. Instead of asking, How can we best manage transition? we must ask, How best can we meet the needs of young people with chronic conditions at this hugely important stage of their journey in life?
“It’s not about the condition, it’s about living with it.” K. L. Shaw
Fundamentally, there are six key skills that will facilitate the transition process for young people living with chronic conditions: confidence, knowledge, trust, responsibility, communication and self-management. Effective transitional care programmes typically use patient education, skills training, involvement in research, joint paediatric and adult teams and a dedicated young adult clinics within adult services to better support young people as they grow in confidence to take control of their health in the context of their personal lives, education and their healthcare environments.
“Any transition serious enough to alter your definition of self will require not just small adjustments in your way of living and thinking, but a full-on metamorphosis.”
Out of the need for better transitional care services for young people with chronic conditions, a team of health professionals, researchers and patients with experience of juvenile-onset rheumatic and musculoskeletal diseases (jRMDs) came together to inform the construction of European guidelines for rheumatology services across Europe, to better support young people with jRMDs, as well as their families.
The EULAR/PReS recommendations task force for transitional care
The aim of the group was to develop standards and recommendations for transitional care for young people with jRMDs. The consensus process involved the following:
- Establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology.
- A systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes.
- Setting the framework, developing the process map and generating a first draft of standards and recommendations.
- Further iteration of recommendations.
- Establishing consensus recommendations with Delphi methods.
- Establishing standards and quality indicators.
The final consensus derived 12 specific recommendations focused on transitional care for young people with jRMDs. These were published in the Annals of the Rheumatic Diseases journal on 1st November 2016. These included:
- High-quality, multidisciplinary care starting in early adolescence;
- The integral role of a transition co-ordinator;
- Transition policies and protocols;
- Efficient communications;
- Transfer documentation;
- An open electronic-based platform to access resources;
- Appropriate training for paediatric and adult healthcare teams;
- Secure funding to continue treatments and services into adult rheumatology; and
- The need for increased evidence to inform best practice.
It is hoped that these consensus-based recommendations will inform strategies to reach optimal outcomes in transitional care for young people with jRMDs, based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks, ensuring that young people and their families are supported to move forward, with the support of healthcare professionals, to a bright and positive future.
“Maybe the journey isn’t so much about becoming anything. Maybe it’s about un-becoming everything that isn’t really you, so you can be who you were meant to be in the first place.”