Transitioning teenagers from paediatrics to adult care

Lloyd Bettell-HigginsCase Study

Great Ormond Street Hospital (GOSH) is home to a leading gastroenterology department caring for some of the most poorly children and teenagers across the country and beyond.

The department cares for children and teenagers suffering from intestinal failure – a highly complex condition which requires a nightly treatment of nutrients to be infused into the bloodstream – something usually administered by parents or carers.

A daunting and complex transition

For teenagers moving from paediatrics to adult care, the transition between care pathways can be extremely disconcerting. With so much change, from being cared for by different multi-disciplinary teams to familiarising yourself with a new hospital environment, for young adults in the process of taking on responsibility for their own care and treatment – often from parents or carers too, some adapt better than others.
To facilitate this change, Patients Know Best (PKB) digitally transitioned patients’ medical histories between Great Ormond Street Hospital and St Mark’s Hospital in Northwick Park, London. It was here that our patient portal was introduced as a ‘medical facebook’ in the gastroenterology unit to support young adult patients.

Encouraging ownership and empowerment

For the move to be successful, GOSH realised that it was vital for patients to be empowered to take active ownership of their health. As the only constant in this transition, it was imperative for patients to take a leading role. PKB enabled patients to do this by providing online consultations and access to their patient notes, clinical letters, appointments and results. However, due to the complex nature of the condition, treatment was typically delivered by multi-disciplinary teams such as specialist nurses, dieticians, pharmacists, home care companies, GP’s, administrators and doctors themselves. Joining up these groups was key to ensure consistency during the transition period – something that was often difficult to achieve with the previous system.

Dr Susan Hill - GOSH
Dr Susan Hill, Consultant Gastroenterologist

Dr Susan Hill, Consultant Gastroenterologist at GOSH said: “Before PKB, we would post a patient’s medical records to the new medical team. Once a consultant received the notes they would be entered into a new system and a new set of notes would be started. However, it’s usually only the person who has access to the notes that has access to the patient information. PKB has the potential to give the whole care team a single view of a patient’s history – and that makes a big difference to their care.”

“We’ve been involving the patient more and more in their own care for some time. PKB offers a form of communication that teenagers are very used to dealing with. They’re not used to reading long paper letters – and that means they’re more likely to get involved.”

Dr Hill has also seen the benefits that openness between patients, families and clinicians can provide. She said: “We’ve definitely learned that there’s no harm in patients and parents having closer access to their information – and having more control. The more open and honest we all are with each other, the more trust develops and the better we are able to look after the patient and their illness.”

“The more open and honest we all are with each other, the more trust is developed and the better we are able to look after the patient and
their illness.”

Dr Susan Hill, Consultant gastroenterologist, Great Ormond Street Hospital

Evaluating impact

Overall, 33 patients were given PKB accounts. A retrospective analysis was performed by evaluating the use of PKB over an 18 month period and by completion of an online survey sent to patients and their families.

The use of the digital platform was evaluated for every PKB account with a 45% response rate. Of those, 87% were completed by the patient and 13% by a carer or family member.

86% of respondents reported that PKB had helped with the management of their care and 92% reported they would “absolutely” recommend PKB to others.

43% of respondents said they used PKB accounts a few times a month, 29% said they used PKB only when unwell, 21% said they used PKB ‘a few times a year’ and 7% used PKB ‘a few times a week’. The average number of messages sent by families per month was 1.5 (range 0.2-4.4).