Qualitative study of secondary with tertiary paediatric epilepsy care

• Research type

  Research Study

• Full title

  Qualitative study of secondary with tertiary paediatric epilepsy care

• IRAS ID

  279321

• Contact name

  Dougal Hargreaves

• Contact email

  d.hargreaves@imperial.ac.uk

• Sponsor organisation

  Research Governance Manager, UCLH

• Duration of Study in the UK

  1 years, 0 months, 31 days

• Research summary

  Previous research has shown that when children and young people with complex epilepsy have shared care including paediatric neurologists, there is a reduced risk of death in early adulthood. Specifically, appropriate involvement of paediatric neurologists as per national recommendations in complex or severe cases has been linked to much lower risk of death for all patients.
  
  The purpose of this research is to explore the differences in aspects of care delivered by epilepsy teams by comparing the perspectives of patients and their families, and clinicians.  Anticipated themes include views on:
  
  - knowledge and expertise of the doctors and nurses
  - the level of resources available in each setting e.g. access to a specialist nurse
  - the way in which risk is discussed
  - support for self-management before transition to adult service
  -the families perception of shared care between general practice, general paediatrics and paediatric neurologists 

  We aim to interview 10-15 patients and their families are under the care of the paediatric epilepsy service at University College London Hospital (UCLH) and have also experienced care at the specialist centre at Great Ormond Street Hospital (GOSH) .  Patients and their families accessing these services will be invited to take part in the project by the clinical team when they attend their appointment and will be provided with a patient information sheet. If the patients/families are interested in taking part, the clinician will pass their details onto a researcher. The researcher will then contact the patients directly to obtain informed consent. 
  
  We will also interview between 3 and 5 doctors and nurses working in the UCLH and GOSH epilepsy teams to explore their perspectives on differences in care provided in secondary care (UCLH paediatric epilepsy service) and tertiary paediatrics (paediatric neurologists).
  
  We will present our findings to the North Thames Paediatric Epilepsy network to find out whether doctors and nurses at other services in North London feel that our findings reflect their experiences in their local service and whether the patients’ and families’ perspectives can help to improve quality of care provided in these settings.

• REC name

  London - Surrey Research Ethics Committee

• REC reference

  20/PR/0888

• Date of REC Opinion

  25 Jan 2021

• REC opinion

  Further Information Favourable Opinion