First, do no harm (primum non nocere): medication for people with intellectual disabilities and autism
The RCPsych Article of the Month for September is ‘Pharmacological management of psychopathology in people with intellectual disabilities and/or autism spectrum disorder‘ written by authors Shoumitro Deb, Meera Roy and Bharati Limbu and published in BJPsych Advances. The blog is written by author Professor Shoumitro Deb.
About 1-3% of the population have intellectual (learning) disabilities. They are prone to developing a range of psychiatric disorders in the same way as the general population. Treating psychiatric disorders in this population should be guided by the appropriate NICE guidelines. However, many people with intellectual disabilities also manifest behaviours that challenge. There are many reasons for these behaviours, including physical (pain such as headache or toothache, constipation, acid reflux, some genetic disorders etc.), psychiatric (psychosis, depression, mania etc.), psychological (stress, trauma, impaired coping strategy etc.), environmental (inappropriate environment, lack of support etc.). Behaviours that challenge are often a means of communication for people with intellectual disabilities and autism.
Both pharmacological and non-pharmacological psychosocial interventions have been used for behaviours that challenge. However, psychotropics are often used for behaviours that challenge in the absence of psychiatric disorders. For example, whereas 2-4% of adults with intellectual disabilities have a diagnosis of psychoses, about 24-32% receive antipsychotics as opposed to 0.9-1% in the general population. Population-based data from the UK and the Netherlands showed that in 71-78%% of cases, antipsychotics were prescribed not for a serious mental illness but often for behaviours that challenge (58% of the time). This off-licence use of psychotropics is the cause of major public health concerns. However, off-label prescription per se may not be inappropriate if the right guidelines are followed and treatment options are reviewed regularly. But, in many cases, these medications have been prescribed for many years without an appropriate review and consideration for rationalisation. Problems are confounded in many cases by polypharmacy, higher than BNF recommended dose and inability to perform necessary investigations (for example, in the cases of clozapine and lithium and also for adverse effect detection) in some people with intellectual disabilities. Therefore, additional safeguards are needed to protect this vulnerable population.
Whereas the evidence for the efficacy of off-licence prescription of psychotropics is weak, evidence of their harm is strong. Under the circumstances, clinicians need to carefully weigh the risks against the benefits of each medication for each person. Given the multifactorial nature of behaviours that challenge, it is imperative to take an interdisciplinary bio-psycho-social approach to assessment and formulation, leading to a multidisciplinary intervention. A multidisciplinary approach and shared decision-making involving the person with intellectual disabilities and their families are even more essential as off-label prescribing in the absence of informed consent which may be the case for many people with severe and profound intellectual disabilities and the lack of evidence of efficacy and concern about medication adverse effects may be considered unethical.
Despite NICE and WPA international guidelines, the concern remains. There needs to be a concerted effort from all stakeholders, including the service providers and commissioners, to address this issue which cannot be solved only by the NHSE STOMP STAMP initiative launched a few years ago to stop overmedication of people with learning disabilities and autism. Appropriate utilisation of resources along with a culture shift helped by appropriate training for professionals, support staff and family carers are needed.
This article discusses an issue that greatly concerns many observers, including myself, ie, the overprescribing of psychotropic medication. This paper presents a critical examination, based on the evidence available, concerning the benefit of such medications with specific reference to the ID population. It highlights the benefits of some low dose antipsychotics but also points to the worrying failure of various guidelines and campaigns to reduce this practice in the interest of patient safety. This article is a “must read” for every doctor working with the ID cohort of patients.
Patricia Casey
Editor-in-Chief, BJPsych Advances