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In her presentation “Improving outcomes following paediatric liver transplantation”, Professor Deidre Kelly (Birmingham) had stressed the importance of issues involved in the transition to adult services. These themes were expanded on by Dr Alison Darcy, Clinical Research Psychologist at Stanford University, and Dr Marianne Samyn, Consultant Paediatric Hepatologist at King’s College Hospital, in their joint presentation.
Dr Darcy specialises in developing models that specifically target individuals who are difficult to reach. In her presentation, which centred on adolescent neurocognitive development in the context of chronic Illness, she explained that neuroimaging studies have shown how adolescence is a distinct period. Higher-order cognitive functioning matures later than “primary” function regions and the development of subcortical regions is also pronounced at that age.
Adolescence is a turbulent period, with 75% of mental illnesses arising before age 24 and with 8% reporting a suicide attempt in the previous year. However, she noted, most adolescents do not get treated for mental illness problems.
Most adolescents exist on a different space-time continuum and experience danger differently. Most importantly, they value their peer groups very highly (this, she noted, has also been observed in some higher primates). As the quality of the peer group matters, this has implications for clinicians. She suggested that clinicians should not tell adolescents NOT what not to do: negative messages inhibit learning and messages should be framed positively. Clinicians could also adjust expectations around self-management, adherence and adaptability, and adopt a “growth mindset” rather than a “fixed mindset.
Dr Samyn is the Clinical Lead at King’s multidisciplinary liver transition service and, in her presentation “Looking after young people: getting it right”, she told delegates that a study by Sagar et al (2015) had concluded that the outcomes were good for young liver transplant patients who transferred to the adult services.
She reminded delegates that other transitions are occurring at the same time, such as leaving school, leaving home, or starting work or college. Furthermore, IMPARTS had shown that amongst young people attending a liver transition clinic, prevalent anxiety and depression were higher than in the general adolescent population (17.7% versus 4-6%) and were similar across liver transplant, AILD and other liver conditions. And they were likely to interact with treatment adherence.
Based on her experience at King’s, she stressed the importance of the multidisciplinary team. She emphasised the need to foster a positive patient/provider relationship, with collaborative decision-making. Therefore, the multidisciplinary transition team should adopt a proactive individualised and flexible approach and be aware of psychosocial, educational and vocational needs.
Liver transplantation (OLT) in children is now highly successful, with a more than 80% 20-year survival.
Deidre Kelly, Professor of Paediatric Hepatology at Birmingham Children’s Hospital NHS Trust, explained that most paediatric liver diseases are potentially curable with OLT and that long-term (i.e. over 10 years) histological outcome of liver allografts is evolving. Innovative surgery has allowed the extension of transplantation to under one year and under 10kg and include split liver and living related transplantation.
These techniques have been matched by improved specialised medical and nursing care, pre-operative nutritional therapy and post-operative immunosuppression. There have been many advances in therapy including anti-oxidant cocktail and iron chelation, exchange transfusions and IV immunogloblulin, primary bile salt therapy and nitisinone.
An example of a major advance has been the centralization, at Birmingham, Leeds and London, of the diagnosis and management of biliary atresia, Kasai portoenterostomy and liver transplantation. From 15 centres (1993-1995) to the three centres (2009-2013), changes in the clearance of jaundice have been 55% to 64%, five-year native liver survival, 27% to 56%, and five-year overall survival, 84% to 93%, respectively.
Prof Kelly believes that current challenges in paediatric liver transplantation include long term outcomes, indeterminate graft hepatitis and fibrosis, the detection and prevention of adverse cognitive or psychological functioning, and adherence and transition to adult care. She stressed that future pre-plant initiatives should include the optimization of nutrition and the time of transplant to prevent neurocognitive damage. And further research was needed on the aetiology of graft hepatitis/fibrosis.
Prof Kelly emphasized the crucial role of managing the transition to adult care. Young people’s anxiety about transition to adult care related to difficulties forming new relationships once in adult care and a lack of continuity of care. A BSPGHAN research project had found that young people with a liver transplant diagnosis felt different from their peers. They adopt different coping strategies in order to manage and cope with their condition. And they identify building relationships with healthcare professionals and having continuity of care as being important for their transitional care.
Three stalwarts of hepatology were presented with lifetime achievement awards at the BASL Conference Annual Dinner.
Dr Roger Chapman, consultant at the Oxford University Hospital, Dr James Dooley, consultant at the Royal Free Hospital, and Dr Alex Gimson, consultant at Cambridge University Hospital Trust, were presented with their awards at the Manchester Football Museum.
Dr Chapman, a founding member of the International Autoimmune Hepatitis Group and the International PSC Study Group, and a Fellow of the American Association for the Study of Liver Diseases, said: “It is a great honour and a great privilege.”
Congratulating BASL president, Dr Greame Alexander, and treasurer Dr David Patch, he said: “When I was secretary of BASL we got 90 people in 1991, and the meeting has grown into what it is today. It is a fantastic meeting and I am very grateful to Greame and David for taking it even further.”
Of Dr Dooley, who co-authored three editions of ‘Diseases of the Liver’ with Dame Sheila Sherlock, Dr Patch joked: “He is loved by all his patients and it’s very hard to see patients after they have seen James because they look crestfallen.”
Dr Dooley said he was moved by the award and the kind words.
“I have had hell of a career with a tremendous number of colleagues and friends in a wonderful speciality,” he said, adding that he had witnessed amazing progress.
“To witness the discovery to the cure of HCV in one career in stunning.”
Dr Alex Gimson, director of medicine at Cambridge from 2003 to 2013, and char of the NHS BT Liver Advisory Group from 2008 to 2013 was also recognised.
Accepting the accolade, he said: “This is a considerable surprise!
“It has been an honour and a privilege to work with these people who are far brighter and cleverer than me. They have taught me an incredible amount.”
Nutrition is key to managing non-alcoholic fatty liver disease (NAFLD) and even a small amount of weight loss can help reverse steatosis and fibrosis.
Jill Johnson, a specialist dietitian in liver disease and hepatobiliary disease spoke about the rising prevalence of NAFLD during the BASL Nurse Forum meeting at conference today.
“We are getting a lot of patients coming through with cirrhosis and it is probably going to become the most frequent indication for transplant,”’ she said, citing a nationwide shift towards higher calorie intake and lower activity levels as the reason.
“Right up to cirrhosis, everything else is reversible. One of the things I do with patients is talk them through their place on the scale and explain they can reverse it.”
Studies have shown losing a relatively small amount of weight, around to 3-5% of body weight, lead to a loss of fat from the liver – though the optimum level was 7-10%.
“We aim for 5-10% of weight loss, but it’s important to break that down and show patients what that means,” said Jill, adding that a 5% reduction in BMI equates to a 28% reduction in liver fat.
Supporting people to lose weight was about motivation and individualisation, she told delegates.
She said: “It's not just trying to lose weight but about what's going on inside. It's motivating for patients to see their LFTs returning to normal.”
She recommended talking to patients about their daily lives and using that information to help them make one easy change at a time.
Jill used the example of a man who had two sugars in his coffee and 20 coffees a day – by losing the sugar, he cut 800 calories from his daily intake.
“Individualise your advice: it might just be parking the car a bit further away from the supermarket or getting off the bus a stop earlier: even exercise without losing weight can cut liver fat,” she said.
Around 10% of adolescents in the UK have a chronic illness, but they have all the same problems and worries as their peers.
Monica Smith asked delegates at the BASL Nurse Forum meeting to remember their duty of care to young people with liver conditions.
“It’s our job to give them all the information they need to be able to live a healthy and fulfilled life within the confines of the chronic illness they are living with,” she said.
Monica, clinical nurse specialist for liver transition at Birmingham Children’s Hospital, recommended all those in the audience get trained on using the HEADSS (Home Education/Employment Activities Drugs Sexuality Suicide) assessment.
“It’s a very good tool and gives you guidance on what questions to ask and how to go forward,” said Monica.
Young people with long-term conditions engage in all the same risk-taking behaviours as other teenagers, such as smoking, drinking, taking drugs and having sex, but might need a little more support.
Monica suggested asking the parents to leave, for at least a part of the consultation, to allow for a more open conversation. Confidentiality is extremely important, she added.
“We have a golden opportunity to utilise the HEADSS survey tool,” said Monica.
“Even if you can’t talk about all the topics, pick two or three that are particularly important to the young person.
“Young people often engage in risky behaviour so helping them to be safe while they assert their independence is our duty of care.”
Pregnancy is a window of opportunity to help expectant mothers deal with substance and alcohol misuse.
Debbie Reid is a specialist substance misuse midwife and said she acted as a conduit between women and the various services they needed to access.
“Most women have never even considered trying to stop before they became pregnant, so it's an opportunity to get them thinking about making positive changes,” she said.
“We have to be optimistic that they can change.”
Of all the drugs she came across in pregnancy, Debbie said, alcohol was the biggest worry as the damage to babies could be irreversible.
“We try to get them through as much detox during the pregnancy as we can,” she said.
Reducing vertical transmission of HCV is a priority in her service and all women referred to her are screened with those testing positive being offered treatment after the birth.
Working with people written off by the system not only helps them get their lives back on track, but saves the NHS hundreds of thousands of pounds.
Mark Holmes, team leader of the Long Term Condition nurses in Nottingham, told the BASL nurses that he and his colleagues had saved the NHS £360,000 in just one year by acting as a “life raft” for people who had “fallen through the cracks”.
“We work with people who have long-term conditions related to alcohol. People who have been written off by the doctors, and in many cases, themselves,” said Mark.
The team identifies “people in trouble” and works proactively with them in a way they are comfortable with.
One such service user shared his story of how Mark’s team had helped him after he had fallen into a spiral of depression and alcoholism following his wife’s death.
“I didn't care if I died, it didn't matter to me,” he said, adding he had tried to commit suicide a number of times.
He was drinking at least a bottle of vodka a day and was homeless by the time he started working with Mark’s team, which helped him access the care he needed.
Despite multiple relapses and hospital admissions, Mark never gave up on him, he said, and one day “it just clicked”.
Mark encouraged nurses in the audience to look into setting up similar services, adding it wasn't hard to find the people who would benefit.
“We know who these people are – they are the ones in our hospitals, they are the ones calling 999,” he said.
There are next to no treatments for hepatic encephalopathy (HE), which can have a devastating impact on the sufferer and their family.
HE is a brain dysfunction caused by a liver insufficiency and/or porto-systemic shunting and it manifests as a wide spectrum of neurological or psychiatric abnormalities. These can range from subclinical alterations that can go unnoticed, to anxiety and confusion, all the way through to coma.
Lynda Greenslade, clinical nurse specialist in hepatology at the Royal Free, gave advice on managing the condition, which she called the “Cinderella of liver disease”, during the BASL Nurse Forum meeting.
“There are no studies on incidence or prevalence of HE in the UK, so we don't know how many people have it,” she said.
“No randomised controlled trials have been carried out in HE, and the first drug for it was only licensed in 2013.”
Unless the underlying liver disease is treated, HE, which is often hidden by other symptoms, carries a high risk of recurrence. Symptoms, which can be recurrent or persistent, include cognitive impairment, changes in personality, changes in consciousness and disruptions to the sleep/wake cycle.
“Even in its mildest form, it reduces health-related quality of life. There is a huge burden of care placed on the family carers, as it may mean giving up work and they often feel depressed about their situation,” said Lynda.
It’s important to treat patients in a safe environment, as they are as risk of falling. Lynda said they may need to be cared for on a high-dependency unit, as they were often disorientated, and nurses needed to be aware of the risk of unsafe airways.
“Nutrition is key, so use an early NG tube for patients with an unsafe airway. Keep family and carers up to date as HE stages two to four can be really distressing to watch,” Lynda added.
Patients are treated with lactulose which works by removing the toxins causing neurological symptoms from the gut, but over dosing can cause diarrhoea.
This can lead to adherence problems, but Lynda’s advice was to explain what the medication was doing and why it was so important.
Once discharged, follow up is important and recurrence is common.
Lynda concluded by saying there needed to be greater awareness of the condition among GPs and the community as a whole.
Everyone dies, so what are we so afraid of? A nurse-led hepatology clinic in Devon is tackling that question head on and is about to be rolled out to other therapy areas.
Tony Moffat, nurse consultant at Derriford Hospital, runs the Thinking Ahead programme for people with end-stage liver disease, those who have had a diagnosis of HCC, and those who continue to drink.
“My view is we should prepare patients with uncertain, life-limiting conditions for potential demise. We should support them to reach a stage of acceptance. We should give them ownership of what happens to them,” said Tony during the BASL Nurse Forum stream at conference today.
His referrals, who are given one-hour slots, are asked to fill out a Thinking Ahead proforma, designed to help them approach the subject, start putting it into real terms and make real plans.
It asks questions like what makes you happy, what has been happening with your health, what would you like to happen in the future, and what kind of support do you have from your family?
“It’s working well. Our trust wants to use Thinking Ahead for cardiovascular disease, elderly care and renal patients,” Tony said.
He said it was a timely end-of-life intervention which empowered and enabled patients to think about the process.
“It takes away from the uncertainty and helps them to accept the unpredictability of their disease,” he added.
Live donor liver transplantation (LDLT) is a valuable treatment option and should be treated as such, delegates were told.
Speaking during the British Liver Transplant Group session at the BASL Annual Meeting today, Dr Krishna Menon, of King’s College Hospital, said it was time to rise to the challenge.
“We have the option of plodding along as we are or we can be calculated risk takers, and risk takers are achievers. There is no path; a path is made from walking,” he said.
He asked delegates if they were even telling people about the possibility of LDLT.
“Looking at LDLT between 2006 and 2016, early on, we did improve, but over the last five years there has o-[lbeen no significant change in the number that have been performed,” said Dr Menon.
This was set against a backdrop of a transplant list that has doubled between 2008 and 2016 and a change in the kind of organs becoming available from deceased donors – both of which make LDLT more useful than ever.
“Donor characteristics are continuing to change: donors are older, more obese, and less likely to have suffered a trauma-related death, all of which have adverse effects on transplant outcomes.
“Only 36% of organs get transplanted and that percentage is on the rise,” he said, adding this was despite age or BMI in themselves being contra-indications.
Referring to guidelines published in June by the International Liver Transplant Society, Dr Menon said they positioned LDLT as a less desirable alternative to deceased donor liver transplantation (DDLT).
“It is important that we offer LDLT as a treatment option that is equivalent to DDLT. The guidelines are trying to create a separate category of the waiting list,” he said.
A number of things needed to be done to increase the levels of LDLT in the UK, he went on.
These included the wide-scale collection of mortality and morbidity data so families could properly understand the risk/benefit profile and nationwide agreement on where and how these procedures should be taking place.
Liver donor transplant co-ordinators should be employed at all transplant centres, and comprehensive mentoring systems need to be put in place, Dr Menon added.
“There is a clear need to increase the numbers of LDLT, but there is a lack of infrastructure and there is a lack of agreement between units on the way forward,” he said, concluding by telling the conference that a meeting of key MDT members from across the country was planned for next month.