Developing and testing evidence based patient information on outcomes for families affected by Hypoplastic Left Heart Syndrome

We are looking for families affected by hypoplastic left heart syndrome to help us with a ‘quality improvement project’ that is being undertaken by a team of people from Great Ormond Street Hospital, University College London, King’s College London with the help of the Charity Little Hearts Matter.

What is this project about?

We are aware that a huge amount can take place in the journey of a child and family affected by hypoplastic left heart syndrome. We think it can be difficult for parents to access and take on board all the information they may need when considering the future for their family and when considering options for treatment. Information needs may vary at different times and between individuals.

Our group of doctors and mathematicians have used the UK National Audit data, which is collected on every child who has a heart procedure of any kind to generate information about the outcomes of children with hypoplastic left heart syndrome. We would like to explore with patient families how to put the data about what happened with previously treated children with hypoplastic left heart syndrome to best use within patient and family information resources that could be used in the future.

Why am I being asked to take part?

You are being asked to take part because your family has been affected by hypoplastic left heart syndrome.

What will happen if I take part?

If you agree to take part we will invite you to join a two hour workshop where we would like to ask for your views and input. Other parents from families affected by hypoplastic left heart syndrome will also take part. Those taking part will be at different stages in the journey and will have faced a range of issues.

We want to ask a group of families who have personal experience of hypoplastic left heart syndrome to help us with designing information resources that will benefit future families in the same situation. Therefore, if you find the first work shop OK, we will ask you to participate in two future workshops in 2018, to review the different types of patient information that we develop.

Do I have to take part?

No, participation is completely up to you / voluntary.

What are the pros and cons of taking part?

The pros are that by participating you may help future families who have been affected by hypoplastic left heart syndrome, by helping to design better fact driven information that they will use.

The cons may be that discussions about outcomes of a serious condition like hypoplastic left heart syndrome are sensitive and could be upsetting. If you become upset or need us to help you access additional support, please do let us know.

What if I want to drop out?

You can drop out at any time.

Will my participation and what I say be kept confidential?

Yes it will be kept completely confidential.

We will ask permission of everyone present to record the workshop with an audio recorder and to take notes about the discussion. But we will make sure that no names are included and no participant will be identified at any time within the records of the workshop.

What should I do if I want more information?

If you would like to take part please let the nurse or the patient group representative who has contacted you know, and they will pass your contact details on to us so we can get in touch with more details about the workshop (s).

If you would like to have further information or wish to write or speak to someone about it, then please contact us:

Dr Katherine Brown, Consultant Paediatric Intensivist

Great Ormond Street Hospital NHS Foundation Trust

Great Ormond Street

London WC1N 3JH

Telephone number 0207 405 9200 Ext 0379

Email:  [email protected]

Please talk about this with family members, friends or colleagues if you wish. It is your choice whether to take part and you may contact us to ask more questions before deciding.

Thank you for taking the time to read this information.

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