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CAPSS 15-year anniversary symposium

CAPSS held a 15-year anniversary symposium on 2nd April 2025. We are pleased to provide below materials relating to this event, including our anniversary report, speaker slides and written summaries of presentations on CAPSS studies.
Summaries of the presentations provided by lead investigators on CAPSS studies are provided below, detailing some of the key research findings. These summaries have been written by members of the CAPSS Executive Committee.

Speaker:
Professor Dasha Nicholls

Summary provided by:
Dr Benjamin Geers, CAPSS Executive Committee

Professor Dasha Nicholls, co-founder of CAPSS, presented key findings from three major studies. The first, Eating Disorders in Children under 13, Clinical profiles from a British National Surveillance Study’ , identified 209 confirmed cases. Most were reported by psychiatrists (75%), with a mean age of 11.5 years and an illness duration of 8.3 months. Notably, 86% were white British, 64% of females were premenarcheal, and 13% were male. Half of the patients were admitted, 11% received NG feeding, and 13% were prescribed psychotropic medication. Latent class analysis of several cohorts supported the emergence of Avoidant Restrictive Food Intake Disorder (ARFID) as a distinct clinical entity.

The CostED study assessed cost-effectiveness of community-based care models for young people with anorexia nervosa. It tracked 298 cases over eight months in 2015 using CAPSS methodology. Although cases identified in specialist services started with poorer baseline measures, outcomes at follow-up were similar to those in generic services. Service use and costs were comparable overall, but initial assessments in specialist services were more likely to be cost-effective.

The Incidence of ARFID study (2021–2022) was a joint BPSU/CAPSS surveillance study which identified 319 cases in CYP between the ages of 5 to 17 in the UK and Republic of Ireland, estimating an incidence of 2.79 per 100,000 children and young people. The average age was 11.2 years; 54.5% were male. Four subtypes—Combined, Sensory, Lack of Interest, and Fear—were identified. Paediatrician-reported cases frequently involved males, chronic selective eating, and comorbid autism.

Together, these studies have influenced diagnostic criteria, clinical training, service planning, and inter-professional collaboration.

Speaker: 
Associate Prof. Tamsin Newlove-Delgado

Summary provided by:
Dr Benjamin Geers, CAPSS Executive Committee

Tamsin Newlove-Delgado from the University of Exeter presented key findings from the Children and Young People with ADHD in Transition from Child to Adult Services (CATCh-uS) study. The study highlighted how a low proportion of young people with ADHD transition successfully to adult services, with high rates of medication cessation between ages 16 and 18.

The research comprised three parts: a surveillance study measuring how many young people require continued support after leaving children's services; a qualitative study exploring the experiences of young people, families, and professionals; and a mapping study examining the availability of adult ADHD services across different regions.

The surveillance study (2015–2016) had a  9-month follow-up and found that only 64% of ADHD transition referrals to adult services were accepted, and just 6% met criteria for optimal transition. For those aged 17–19, the incidence of transition need ranged from 202–511 per 100,000, with successful transitions at 38–96 per 100,000.

Qualitative findings revealed that pre-transition medication use was often viewed as being linked to coping at school, with limited reflection by children and young people into ADHD’s impact in adulthood.  

In summary, few young people needing ongoing ADHD support experienced successful or optimal transitions. There was wide variation in service provision, and the mapping process itself yielded valuable insights. The study underscored the need for better investment, clearer service structures, and improved information sharing to support effective transitions.

Speaker:
Professor Kapil Sayal

Summary provided by:
Dr Rachel Downey, CAPSS Executive Committee

Professor Kapil Sayal presented his work with the Far away from home study. The surveillance study captured data from general adolescent units in England with admissions greater than 50 miles away from a young person’s home, general adolescent units outside their NHS commissioning region area or Adult psychiatric wards.   

This study has yielded 4 publications so far including; qualitative studies, the surveillance study and multi-methods investigations into adolescent inpatient experiences during COVID-19.  

The study looked at 290 cases with 279 at distance admissions. It estimated that approximately 25% of all general adolescent unit admissions are out of area. 80% of patients were admitted due to suicidal risk and 53% were admitted under the mental health act. The main reasons for an admission to a bed far away from home was that there were no local beds available, and emergency admission was needed.  

Prof Sayal highlighted that at-distance and adult ward admissions continue to be used. This is driven by Risk management, particularly suicide risk. He described the recommendations to reduce far away from home admissions. These include; Improved risk identification and management, improved management of high-risk young people, improved intervention at lower risk to prevent escalation, closer collaboration whilst awaiting admission and improved inpatient-community links to prevent delays.  

Following Prof Sayal’s comprehensive review of the Far Away from home study, Ms Toni Wakefield (CAP Faculty carers Rep) gave her perspective as a mother of an adolescent who had been admitted far away from home. She was able to reflect that her daughter fulfilled most of the clinical characteristics found in those most commonly admitted far away from home. She highlighted the need for the recommendations that were included in the study to be implemented nationally. She also explained that much of this study had been conducted with high levels of patient and carer participation ensuring that it properly represented those affected by far away from home admissions.  

Speaker: 
Dr Adiya Sharma

Summary provided by:
Dr Muthu Venkatesan, CAPSS Executive Committee

Dr Adi Sharma gave a talk on the topic ‘What’s bipolar about paediatric mood disorders?’ He also discussed the CAPSS study titled ‘Incidence, characteristics and course of narrow phenotype bipolar disorder type 1 in the British Isles.’

These are some of the important points highlighted in his talk:

  • The peak age of onset of bipolar disorder is 15 to 19 years, and there is often a substantial delay between onset and first contact with mental health services.
  • The prevalence rate of bipolar disorder in youth population varies among different countries and it is lower in UK comparing to other countries.
  • The above mentioned CAPSS study aimed to estimate the surveillance incidence of paediatric bipolar disorder in the UK population and to study about the symptomology, comorbidity, associated factors, management strategies and clinical outcomes at 1-year follow-up.
  • There were 151 cases in total reported based on the initial questionnaire and around 26% fulfilled the analytical definition criteria.
  • The median duration between the first onset of symptoms and diagnosis was 6 weeks (range 0–200 weeks).
  • The median age at the time of first diagnosis was 15 years and 2 months (range 10 years–15 years 11 months).
Around 60% of the sample had a previous history of mood disorder.

At the end, Dr Adi summarised his talk with the following points:

  • Paediatric bipolar is infrequently diagnosed in UK and ROI, but not rare.
  • It is still unclear to understand about the factors behind the infrequent diagnosis in UK comparing to other countries.
  • Early onset depression may be one of the risk factors for paediatric bipolar disorder.
After the presentation, there was a discussion between panel members and the audience. Some of the important issues discussed were course and outcome of paediatric bipolar disorder and the varied diagnostic approach by the child and adolescent psychiatrists in the UK.

This study paved the way for commissioning the national level specialist service for treating severe mood disorder in children and adolescent population.

The National Adolescent Mood Disorder Service (NSAMS) is a specialist service that provides second opinions for children and young people up to the age of 18 years, who present with uncertainty around a mood disorder, for example difficult to treat unipolar depression or bipolar disorder because of complex presentations.

Read more to receive further information regarding a career in psychiatry