{
  "abstract": "Children and young people (CYP) with inflammatory bowel disease (IBD) are at increased risk of developing psychological problems compared with the general population. 1 However, local data on the prevalence of mental health disorders in CYP with IBD and their experience of accessing support remain limited. A prospective audit was undertaken to quantify the burden of mental health conditions, explore barriers to support, and identify opportunities for service improvement.A questionnaire was distributed to all CYP under the age of 18 years with a confirmed diagnosis of IBD under follow-up in a tertiary gastroenterology service (n=247). The survey was conducted electronically using secure text message invitations with a one-month response period and weekly reminders. A total of 126 completed responses were received, representing a 51% response rate.Of those responding, 13 children (10%) had early onset IBD before the age of 10 years. Fifty-three children (42%) were aged 16–18 years and therefore approaching transition to adult services. Sixty-seven children (53%) were receiving biologic therapy at the time of the audit, including infliximab in 47, adalimumab in 13, ustekinumab in 2, and vedolizumab in 1.Nineteen children (15%) reported a diagnosed mental health condition prior to their IBD diagnosis. A further 32 (25%) developed a mental health condition after their diagnosis of IBD, meaning that overall 51 children (40% of responders) had experience of a mental health problem.With respect to treatment burden, 48 children (38%) reported attending hospital monthly(4-6weekly) for infusions, and a further 33 (26%) attended (8-12weekly)a few times per year. Ninety-six children (76%) indicated that IBD had an impact on their daily life, which included disruption to school attendance and restriction of social activities.CYP and families reported a number of barriers in accessing psychological support. The most frequently cited were long waiting times for specialist services, lack of support provided in school settings, and difficulty accessing help for those with pre-existing mental health problems. When rating the quality of care received, children and families indicated lower satisfaction with psychological support compared with satisfaction with medical treatment and dietary advice.Participants also suggested several improvements as routine enquiry about mental health at the time of IBD diagnosis and during follow-up appointments, direct access to clinical psychology embedded within the IBD service, improved signposting to available resources, and stronger liaison between the IBD team and schools.This audit of 126 children with IBD highlights that 40% had a mental health problem, either predating or following their diagnosis, and more importantly 76% reported disruption of daily life due to their condition. Despite this, access to appropriate psychological support was reported to be limited. These findings support the systematic integration of mental health assessment and clinical psychology into paediatric IBD services. Planned actions include embedding routine mental health enquiry into consultations, advocating for psychology input within inpatient and outpatient IBD care, strengthening links with schools, and re-auditing after these changes to evaluate their impact.Reference Cooney R, Tang D, Barrett K, Russell RK. Children and young adults with inflammatory bowel disease have an increased incidence and risk of developing mental health conditions: a UK population-based cohort study. Inflamm Bowel Dis. 2024 Aug 1;30(8):1264–1273.Results and ConclusionsStakeholderObstaclesSolutionsResearch team and Principal investigator• Lack of prioritised research time for PI.• Overstretched clinical service requirements.Develop research mentors within trusts and integrated care boards (ICBs).Contractual re-negotiations for protected research time.NHS trust• Prolonged waiting times for newly diagnosed and follow up patients.• Authorities not licensing new drugs in children, limiting options to 2 IBD treatments.Develop integrated clinical pathways to ensure research capacity allows for prompt diagnosis and follow up of trial participants.Pharmaceutical company• Research protocols not tailored to regional needs.• High volumes of blood required for central tests, based on adult volumesGreater collaboration needed with NHS Trusts allowing for protocol allowances in keeping with local needs.Central laboratories to invest in child-specific blood processing equipment.Patients and families• Longer and more intense assessments required as part of trial vs standard of care.• Screen failures attributed to steroids obscuring symptoms in patients with severe disease who appear clinically improved.Highlight benefits of being part of research. Good communication with family from Informed consent to end of trial participation.Reduce dependency on repeated endoscopic assessments. Utilise validated proxy markers, i.e. PUCAI, MINI index etc.",
  "authors": [
    {
      "affiliations": [
        "Leicester Royal Infirmary"
      ],
      "name": "Vamsi Gangalam"
    },
    {
      "affiliations": [
        "Leicester Royal Infirmary"
      ],
      "name": "Emma Large"
    },
    {
      "affiliations": [
        "Leicester Royal Infirmary"
      ],
      "name": "Hemant Bhavsar"
    }
  ],
  "title": "OC1 Mental health and wellbeing in children with inflammatory bowel disease: a prospective audit of experiences and service needs in a tertiary gastroenterology service in England",
  "uid": "630c9e6b-0468-52b4-90a0-0d36532f4088"
}