Holistic support for treatment-resistant neuropsychiatric disorders
Supporting families with a holistic approach to integrated mental and physical health care for young people with treatment-resistant co-occurring neuropsychiatric disorders and medical conditions
At the heart of South London and Maudsley's NHS Foundation Trust's National and Specialist services is a little-known but hugely impactful national specialist outpatient team of psychiatrists, psychologists, and data scientists headed up by Consultant Child and Adolescent Psychiatrist Professor Paramala Santosh.
The Centre of Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD) offers a holistic approach to integrated mental and physical health care for children and young people with complex, severe, and treatment-resistant co-occurring neuropsychiatric disorders and medical conditions, including rare diseases
The team focuses on children and young people (CYP) aged 2-18 with treatment-resistant neuropsychiatric disorders, CYP aged 2 to 25 with neuropsychiatric symptoms arising because of rare diseases such as Mucopolysaccharidoses, Batten Disease, etc., and the CIPP Rett Centre manages patients with Rett syndrome across the lifespan. The service is unique in that it provides care for CYP with childhood dementias occurring in Niemann-Pick disease, Batten disease, and other rare diseases and more recently, has provided neuropsychiatric support for CYP who have had gene therapies or transplants for various physical conditions.
Here, Professor Santosh tells us a bit about his team's work and the impact it can have on not just the children and young people they treat but also on their families.
"The kind of patients we see are the most complex patients in the country. They usually have around 6-7 conditions at the same time. By the time they come to us, they are treatment resistant, so they haven't been responding to typical treatments that have been offered.
“We see patients with major mental illnesses such as bipolar disorder, schizophrenia, and catatonia usually in the context of neurodiversity. I think we are one of the few services in the country that specifically deals with this group of patients because these conditions are rare in children.
“Mental health focus in rare disease is lacking. If you combine all the rare diseases, you will find that one in 17 people will have a rare disease, so it's not that rare. Each rare disease is rare, and you may have only around 300-400 patients in the country. Still, if you put all rare diseases together, you will find that at least 50% of those conditions involve the brain. The moment the brain is involved, then you are very likely to have neuropsychiatric consequences.
“Many of the children and young people that we treat are nonverbal, so we have to do a lot of work to interpret data using their physiology so that we can identify whether children are anxious, in pain, or having other problems, even when they can't communicate. Data collected using the wearables allows us to examine timing and what's happening so that we can optimise medication and non-medication strategies.
“For example, a non-verbal child had emotional and behavioural outbursts, whose wearables data showed abnormal readings twice a day. When looking into this, we noticed that these readings always occurred when the patient was transferred into transport. We looked into this further and realised that when the child was being moved and the wheelchair was tilted there was something which was poking the child in the back and causing discomfort. We were able to correct the problem and improve the child's experience because we could see from the data that something was wrong, even though the child could not tell us themselves.
“Often, we end up having to use medication to treat the CYP and have developed our own strategy for reducing risk, called the minimum effective dosing strategy. By using this approach, as well as pharmacogenomics, we can reduce the likelihood of patients developing major side effects with medication.
“Another important role that the team plays is in providing central care coordination, because we are involved in the long-term care of our patients. We spend a lot of time in ‘repackaging medical information’ and providing it to patients and families to use when they are being seen by other specialists, allowing specialists to quickly make sense of the data. We do this so that when a child with multiple conditions such as cardiac problems, respiratory problems, epilepsy, movement problems, plus neuropsychic problems, goes to see a cardiologist where they may have a 10-minute appointment, their parents or carers can focus on the relevant information to share with the specialist rather than talking about everything that's happening. This helps to improve care coordination significantly because, in rare diseases, care coordination is a significant problem, as you've got multiple hospitals and multiple specialists involved.
“When viewed together, our team focuses on delivering fully holistic, personalised care for those patients who are deemed clinically the most at risk. One element of this is that of the patient voice. The CIPPRD is guided by principles from Parent/Carer organisations giving particular consideration to ensure representation from those whose voices that often go unheard, including patients from minoritised communities and disadvantaged backgrounds.”
The team has co-developed a HealthTracker platform that can collect information about symptoms, quality of life, side-effects etc., from patients, parents, carers, teachers, clinicians etc, and can also generate automated clinical alerts driven by AI. A patient completes a 5-minute questionnaire, and there is an AI-driven algorithm that alerts the team immediately based on clinic-specific clinical risk criteria. It means the team can react immediately to an impending risk rather than waiting for an appointment in three months, and thus helping to prevent hospital admissions and significant consequences of untreated issues.
You can find out more about the work of the Centre of Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD) https://slam.nhs.uk/service-detail/service/centre-for-interventional-paediatric-psychopharmacology-and-rare-diseases-cipprd-151/.
Research conducted by the team can be viewed at http://www.kcl.ac.uk/ioppn/depts/cap/research/cipprt/index.aspx and their publications can be viewed at https://orcid.org/0000-0003-4830-5893
