Transition – Moving to Adult Healthcare Services: An Overview

By Yolanta Breese

Introduction

I am a parent/carer of a young adult who was diagnosed with several pituitary conditions following the removal of a craniopharyngioma as a child. I am currently studying for a PhD at the University of Plymouth. This article is about the findings from one of my studies exploring the experiences of young people as they undertake, or have previously undertaken, the process of transition from a paediatric (children’s) hospital to an adult hospital.

What is transition?

Young people with childhood onset pituitary conditions will at some point transition (move), from a children’s hospital to an adult hospital. This transition usually occurs at a time when other things might also be happening in the young person’s life – for example, moving to secondary school or university. The transition to adult services should not happen haphazardly, but should be a carefully thought through process, that is developmentally appropriate, and patient-centred, to ensure that both continuity of care and optimal care is provided.

My PhD study with The Pituitary Foundation

This study was undertaken in collaboration with The Pituitary Foundation, to explore the ‘lived’ experiences of young people with a pituitary condition as they undertake, or have previously undertaken, the process of transition. The main aim was to understand the issues and challenges that can arise during the transition process.

There can be anxiety associated with change, in particular the change from the relative safety and comfort of a children’s hospital to moving to an adult hospital and the uncertainty of what adult services will be like. Children/young people and families can become extremely attached to individual staff as a lot of time has often been spent on the wards at a children’s hospital. Some members of staff at a children’s hospital will be seen as part of an extended family, and the child and family may be reluctant to move on, due to the compassion and trust that has been built up from diagnosis through to surgery, treatment and recovery.

The young people who took part in my study talked about the significant cultural differences between paediatric and adult services. They described how children’s hospitals take a more holistic approach (with whole family involvement), in contrast to the focus being more on the medical management and maintenance of the young person’s condition within adult services.

It became clear that communication issues are a key concern. It was evident that very little, if any, discussion took place between the young person and healthcare professionals at the time of transition to adult services, resulting in young people’s queries about adult services not being answered. Additionally, there was a distinct lack of communication between young people and medical teams within and between hospitals, General Practitioners (GPs) and other outside organisations, for example, the Ambulance Service. This required the young person to move from being in a more ‘passive’ role within a children’s hospital to a more ‘proactive’ role, taking responsibility for their own self-management, within an adult hospital.

Some of the young people talked about their care experiences during the Covid pandemic where some in-person consultations moved to telephone consultations, particularly within adult services. Though this was considered to be a ‘safer’ option for the young people involved during this time, this resulted in less frequent routine tests being carried out and delays in relaying test results. In some cases, this led to reduced quality of care and a deterioration in health of the young person involved.

For the general population, the Covid pandemic is considered something in the past, but for some young people who may be immunocompromised (weakened or lowered immune system due to their pituitary condition), Covid has never gone away. Precautions such as mask wearing, having windows open in enclosed spaces and handwashing still have to be undertaken.

There are things that could be done to improve young people’s experiences of transition. For example, GPs could have a key role to play during the transition process as they are often the first port of call for any medical need and may also be familiar with the patient/family over many years. However, in talking to the young people it became clear that their GPs had very limited, if any, contact with the hospital at the time of transition.

Having a named nurse (endocrine nurse or transition nurse) in place to oversee the process of transition would also help, ensuring that appointments are made and allowing the young person to ask questions about the adult hospital and provide reassurance. Having a support system in place, whether provided by family, friends, healthcare professionals and/or organisations such as the CGF and The Pituitary Foundation, is essential so that the young person does not have to deal with the many challenges of living with a pituitary condition on their own. If there is no transition process in place, young people are at a higher risk of falling through the gap between children’s and adult services. This results in negative outcomes for the young person, not only at the time, but also in the longer term, adding more pressure on the NHS.

It is anticipated that these findings, alongside the further studies being undertaken with healthcare professionals, will have important implications and relevance to clinical practice that will impact positively on service provision for young people at the time of transition and beyond.