Baseline Questionnaire for Individuals with an Eating Disorder

Information Sheet for Patients (13-Adult)

8% of survey complete.

Project title: Effectiveness of the SUCCEED DVD for Patients with Eating Disorders and their Recovery Mentors

Ethics approval reference:

Principal Investigator: Professor Janet Treasure

Research coordinator contacts:
1. Hannah King, Salomons Centre for Applied Psychology, Salomons Estate, Broomhill Rd, Royal Tunbridge Wells, Kent TN3 0TG, h.king103@canterbury.ac.uk

2. Charlotte Rhind, PO59 103 Denmark Hill, King's College London, SE5 8AF/ 020 7848 5963 / charlotte.c.rhind@kcl.ac.uk

Invitation to the survey

You are invited to take part in this survey. Before you decide, we would like to give you some information so you know what will happen.

Please take time to read it and discuss it with your family, friends, relatives or your GP if you wish. If you need any further information you are very welcome to contact us. If you are under 16, please make sure you look at this sheet with your parent or guardian.

Part 1 tells you about the study, so you can get an idea of whether you want to take part. If you are interested, part 2 tells you more about the study to think about before you consent (agree to take part).

Part 1

First of all, what is a carer?

A ‘carer’ is someone who supports you on a regular basis. This might be one of your parents, a friend, partner, or other relation. They need to be over 18, and also want to take part.

What is this study about?

We want to find out whether carers watching a specially made DVD about looking after someone with an eating disorder can help reduce the eating disorder symptoms of the person they care for. We also want to see whether watching the DVD helps carers look after themselves more, and feel more satisfied with the eating disorders treatment you normally have. We are not looking for the causes of eating disorders.

Can I take part?

You can take part if you have a diagnosis of Anorexia Nervosa, Bulimia Nervosa or Eating Disorder Not Otherwise Specified (EDNOS) and are having treatment (inpatient or outpatient) for your eating disorder. You will need to be able to read and write English.

At least one of your carers will also need to take part. If you are under 16, your parent or legal guardian will also have to tell us that they are happy for you to take part.

Do I have to take part?

It is up to you to decide whether or not to take part in this study. It will not make any difference to the treatment you get for your eating disorder. You can change your mind and stop at any time, and don’t have to give a reason. We will keep the information you have given us up to that point to add to our study, unless you ask us not to.

What will happen if I take part?

We will ask you to first sign the consent form to say you are happy to take part (you can still change your mind after signing this).

You will then fill in an online questionnaire, which should not take longer than 20 or 30 minutes. It will ask about your eating disorder and your carer, or carers, who also take part in this study.

When at least one of your carers have also filled in their questionnaire, they will either start watching the DVD or they will wait for 6 months, then start watching the DVD. This is decided at random for our study. Once they start, they will be emailing someone in our team, to support them to work through the DVD.

We will ask you to fill in the survey again in three and six months’ time, but it will be shorter as some of the questions will only be on the first survey.

What are the possible benefits of taking part in this study?

We hope that the information you provide will help improve services for people with eating disorders and their carers.

Who will know I’m taking part and who will be able to see the answers I give on the survey?

The only people that will know you are taking part are our research team, your carer (and parent/guardian if you’re under 16), and the medical professionals involved in your treatment. We won’t share the answers you give on the questionnaire with your carer (or parents or guardian if under 16) except in very rare cases. There is more information about this in part 2.

The information you give us on the survey is confidential (private) and will be kept separately from your name and contact details, so it is completely anonymised (this means no-one will be able to tell who the data is from). This anonymous data will then be shared with the other researchers for the study, and general information may be used for training.

We will contact the person who you usually see for treatment to let them know you are taking part and check certain details. You can see more about this in part 2.

Part 2

Who else will know about my taking part in the study?

When you complete the first survey, you will also be asked to tell us who you usually see about your eating disorder, for example your doctor or specialist, or the team who treats you. We will send them a letter to say you are taking part in the study, and ask them to confirm your age, diagnosis, BMI, and that you are having treatment for your eating disorder. We will also ask them whether they know of any reason for you not to take part.

Reasons you might not be able to take part in the study

If the clinician tell us that you that you need treatment for your eating disorder that you have decided not to have, you won’t be able to take part in this study.

You also won’t be able to take part if you have other serious problems that complicate your eating disorder. For example, Bipolar Affective Disorder, using a lot of alcohol or non-prescribed drugs, or having serious physical problems.

It is very unlikely, but if there is good reason for you to stop the study, we will talk to you and your carer about this to decide what to do and make sure you are supported.

Might my answers be shared with my carers or treatment team (or parent/guardian, if under 16)?

We will share your answers about your name, age, address, BMI and diagnosis with your clinician. Apart from this, we will keep all your answers confidential, unless we have a very good reason to be worried that we need to share this information to stop serious harm coming to you or someone else. For example, if you told us on the questionnaire that you were going to harm someone. In a situation like this, we would always talk to you about, it we could, before sharing it with anyone else. If we had to do this, we would share the smallest amount of your information that we could. It is very unlikely that this would happen though.

Is there any risk I might be harmed by taking part?

As you will be just be filling out questionnaires online, we do not have any reason to expect that this could harm you. If you find you become distressed and would like to talk to someone, you can call us on the number above or the Beat helpline on 0845 634 1414 (adults) or 0845 634 7650 (young people under 25).

What if something goes wrong?

Any complaint about the way you have been dealt with during the study will be addressed. To start with, please contact the researcher (email address above). If you are still unhappy and want to make a formal complaint, please contact Charlotte: charlotte.c.rhind@kcl.ac.uk

What will happen to the results of the study?

The information you and the other people taking part give us will be analysed. We plan to publish the findings within around two years.

Will I be able to see the results?

When you consent you will be asked whether you would like a copy of the results. If yes, we will send these out to you when they are ready. If you don’t want to consent but still want to see the results, please email Hannah: h.king103@canterbury.ac.uk.

How will my data be kept?

Information we collect from you will be stored securely on password-protected computers, and be identified by a code, rather than your name. It will be kept for 10 years, and then destroyed. The only people who will have access to it will be the researchers who have been approved to work on this study. Once it has been completely anonymised (so you could not be identified at all) the ‘raw data’ would be available to others, for example university examiners and other researchers.

Contact for further information

If you have any questions or wish to discuss any aspect of your participation in this project, please contact Hannah King (project coordinator) using the contact details above.

Question Title

* 1. Consent to participate in this study

If you would like to proceed, you must first agree consent by ticking the box below. Please read carefully and only tick if you are happy to take part and understand what will happen.

I have read and understand the information sheet for the study and have had the opportunity to ask questions. I understand that taking part is completely up to me and that I am free to stop and withdraw at any time, without giving any reason, without my treatment or legal rights being affected. I understand that my answers on the questionnaire and any conversations with the researchers is confidential and will not be shared with my friends & family members or my treatment team unless there is very serious concern about the safety of myself or another person. I agree to my clinician or treatment team being contacted for the information explained above, and asked whether they have any concerns about me taking part in this study. I agree take part in the above study.

Question Title

* 2. If you’re over 16, please skip this section.

If you are under 16, and the carer taking part in this study is not your parent or legal guardian, please provide the name and contact details of a parent or legal guardian. We will contact them to ask them if they are happy for you and your carer to take part in this study. You can contact us first about this if you like.

Name:

Address:

Telephone Number:

Email:

Relationship to you - the carer is my ________:

Question Title

* 3. Would you like to receive a summary of the research findings?

Please send me a summary of the findings of the research when they are available.

Question Title

* 1. Consent to participate in this studyIf you would like to proceed, you must first agree consent by ticking the box below. Please read carefully and only tick if you are happy to take part and understand what will happen.

Question Title

Question Title

* 3. Would you like to receive a summary of the research findings?

* 1. Consent to participate in this study

If you would like to proceed, you must first agree consent by ticking the box below. Please read carefully and only tick if you are happy to take part and understand what will happen.