XClose

Clinical Operational Research Unit

Menu

OPTICAL Study

The OPTICAL study website is under construction. Please find below a summary of the study information and check back soon for the full website.

What is this study about?

 For young people with complex health needs, moving from paediatric to adult intensive care can be a particularly vulnerable time, especially as there is not yet enough information on how to make this transition smoother for these patients and their families.

The OPTICAL study aims to provide the necessary research for the development of clearer guidelines on ICU transition, and hence improve the experiences of patients and their families.

 

What does the study involve?

Data will be sourced by four methods to better understand the experiences of teenage and young adult (TYA) patients, carers and health professionals during the transition.

  1. We will be analysing pre-existing data on patients who were admitted to intensive care between 14 and 21 years of age (national and audit data).
  2. We will be collecting qualitative data on patient experiences by 1:1 interviews with patients, families, and health professionals.
  3. We will be collecting data on patient experiences by surveys from patients, families, and health professionals.
  4. We will also be working with three national charities (Mencap, Wellchild and ICUSteps) to develop online forums to elicit patient and family perspectives.

 

What is our legal basis for using data?

  • To analyse pre-existing health data, we applied for ‘section 251 approval’ which was reviewed by the Confidentiality Advisory Group (CAG). CAG is an independent group of lay people and professionals which provides expert advice on the use of confidential patient information without consent.
  • Participants in the interviews will provide consent.
  • For the surveys, consent will be inferred by completion.
  • Participants in online forums will provide consent by joining the forum.

 

What information will we hold?

  • The audit and national data we will apply for includes data on treatment, diagnoses and outcomes from:
    - Paediatric intensive care
    - Adult intensive care
    - Other hospital stays and follow up appointments
  • All the data used by the OPTICAL study will have any information that might let people know who you are taken out and replaced by a study ID number.
  • This means that all your information will be kept private and UCL will not know your name, date of birth, or address.
  • Your health data and any interview and survey answers will be kept on secure, password protected servers at UCL and GOSH.
  • If you have taken part in the interviews, we will only hold your contact details with your consent.

 

For further information on the data we are collecting and why, go to the OPTICAL study privacy notice or the easy read privacy notice.

 

 

Contact

You can contact the OPTICAL study team on optical@gosh.nhs.uk