Recent studies in autoimmune hepatitis reveal bleak picture in current treatment regimens, poor quality of life & poor outcomes for patients
Here Dr Roger Chapman, Consultant Hepatologist at the John Radcliffe Hospital in Oxford, explores concerns raised by these papers, provides a perspective of the conclusions and suggests future actions to improve the outcomes and QoL for AIH patients. To read more click here:
‘These study outcomes were undoubtedly disappointing and should be of concern to anyone working or living with AIH,’ says Dr Chapman. ‘They show that many patients with AIH are enduring poor QoL, living with deeply unpleasant side-effects from varying and sometimes inappropriate treatment regimens as well as facing low remission rates. This situation reflects, the current lack of knowledge about AIH and how to treat this condition correctly and needs to be remedied as soon as possible.’
‘One of the key issues that has to be addressed is the prevailing clinical view that, unlike PBC and PSC, AIH is a condition which is easy to treat and somehow not very serious. Neither of things are true. However, this attitude means that AIH patients are often left to be treated by junior doctors or are referred to a general GI clinic where the specialist knowledge needed for this complex condition is usually lacking.
‘The Dyson study found that there were twenty-nine different treatment regimens being used in AIH. This is unacceptable and unnecessary. With AIH treatment guidelines, including the 2015 European guidelines which clearly lay down the treatment pathways, it is disappointing that these are not being followed.
‘Another area of concern flagged up by Dyson was the poor remission rates at 59%. Although the rate at specialist centres was higher at 62% than non-specialist centres (55%), overall the picture is bleak and does need to be addressed with some urgency. Again, this goes back to poor clinical knowledge. Many clinicians feel that, once the liver function values have reduced from initial diagnosis – usually after the patient is put on a regimen of steroids – then the job is done, whereas the guidelines state that best outcomes for patients are achieved when liver function tests are reduced to and maintained at normal range and this should be the aim of any treatment regimen. Clearly this is not happening.
‘It is also particularly worrying to see that AIH patients who are diagnosed before the age of twenty have a higher chance of progressing to cirrhosis and even more concerning that their outcomes were dependent on place of care. This cannot be right and should be addressed as a matter of urgency.
‘Wong et al highlighted the QoL issues for those living with AIH mainly as a result of the corticosteroids they take. These have been well documented in the past and include weight gain, osteoporosis, Cushingoid, sleep disturbance and mood swings. However, it was quite shocking to note that around 1/3 of AIH cohort were obese, Cushingoid featured in 20-50% of patients, diabetes in 15-20%, hypertension, cataracts, psychosis and osteoporotic vertebral collapses in 5-10%. These are serious concerns and not just for the patient who has to live with such poor QoL. Non-adherence due to unpleasant side effects is a real issue in AIH and clearly, if the patient stops taking steroids then his or her outcomes will be far worse.
‘Given that corticosteroids are the first line of treatment for AIH, it seems a surprising that only 2% of patients were on budesonide, a topical steroid that has far fewer side effects than prednisolone. In our clinic, budesonide is always considered for patients with mild to moderate AIH although there is not yet evidence for the efficacy of Budesonide over the long term.
‘As Wong et al concludes, ‘A key conclusion of our paper is that clinicians should be more aware of the potential for impaired life quality and health utility in patients with AIH who are on corticosteroids. This should be factored into decisions regarding the appropriateness of long-term corticosteroid therapy with clinicians being aware that steroid minimization, as opposed to discontinuation, may not confer benefit.
‘Overall these two studies make clear that there is a long way to bring the standard of AIH care up to an acceptable level. We need to educate clinicians and nurses working in the field and ensure that they are made aware of the guidelines, that they understand and make decisions based around patient QoL and that they work towards improving remission rates as a matter of urgency.
‘Currently one third to one half of all patients will go on to develop cirrhosis. AIH is a serious, life-threatening disease and should be regarded as such.’