Closed Recruiting: Measuring the Impact of (ME/CFS) on the Patient and Family using the EQ5D and FROM-16 questionnaire

From the study participation leaflet.

You are invited to take part in a research study conducted by researchers at Cardiff University. Before you decide, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please do not hesitate to contact the researchers if anything is unclear or if you would like further information. Take time to decide whether or not you wish to participate.

Thank you for taking the time to read this.

Study title:

Measuring the Impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on the Patient and Family using the EQ5D and FROM-16 questionnaires.


What is the purpose of the study?

The aim of this project to explore the impact ME/CFS has on people with ME/CFS and their family members. To help with this, two quality of life questionnaires will need to be completed by participants.

1. Patient questionnaire. EQ5D this is a short and validated questionnaire
2. Family Member questionnaire. FROM-16 stands for ‘Family Reported Outcome Measure’ and measures the impact of the patients’ illness on a family members’ quality of life.

The research will take place from November 2020 to March 2021.


What is involved in participating in the research/study?

Taking part in this study involves completing a consent form and a quality of life questionnaire.

We plan to include at least 500 families in this study.

....

The researchers involved in the study who will have access to your data are Prof Andrew Finlay, email: finlayay@cardiff.ac.uk. Dr Ravinder Singh, email: singhrk2@cardiff.ac.uk. and Dr Jui Vyas, email: vyasjj@cardiff.ac.uk. Mrs Rachel Ephgrave and Miss Nina Muirhead, email: nina.muirhead@nhs.net, will have access to your anonymized data.

Survey link, https://medicinesurveys.cardiff.ac.uk/redcap/surveys/?s=XRLKHXTAAF

 

Done!

 

Looks good!

I'd do it if I could, but I live alone and have only one close relative, so my illness doesn't really impact on anyone but me.

 

Just to confirm, this is open to pwME anywhere? Or UK only?

 

Anywhere.

 

I have seen Dr Nina replying to queries on a private FB page and have asked her whether she is a member here/able to respond or whether I may précis her replies across.

 

Merged thread

from MEA website
"
We are excited to announce a new international research study looking at the impact of ME/CFS on the quality of life of both patients and their family members.
This is a short and simple online survey designed to be accessible to all adults 18+, including severely affected patients."
"Please complete this quick survey to help improve international understanding of how ME/CFS impacts patients and family members."

https://meassociation.org.uk/2020/1...urvey-by-dr-nina-muirhead-cardiff-university/

 

I sent the research team this feedback

Given that they are using a set questionnaire, presumably in order to be able to compare to other illnesses that have been measured using it, I'm aware that they won't be able to change them but thought I'd highlight it anyway.

Even though the questions are certainly open to interpretation, I have confidence in Nina and the team involved not misrepresenting the results. While these sorts of studies aren't going to find a cure, we need this sort of thing recorded to demonstrate the enormous toll that ME has.

 

Dr Nina has said that I can transfer her responses across to SfME, so for @Kitty ....


Apparently you can still take part and your replies to the ‘quality of life‘ questions would still be included in the data. You can chose whether to ask your relative to complete the questionnaire or not.

Dr Nina Muirhead said:

“You are welcome to complete the patient part. Many are isolated, particularly at the moment. If you do have family you can save and send them the link. If you don't you won't be excluded from the quality of life data. Sorry to infer that you are on your own. Very best wishes“
“Or resulted in not having the energy capacity to have a partner or family. I don't want to upset or offend anyone.”

 

I have fed these ideas back to Nina.

On the FB page, she has also received requests for a survey to include families with children under 18:

“Sadly this version is not validated nor has ethics approval for research with children but people do seem to be keen and it would be great to set up another similar study to include children. A couple of us volunteers on the team have ME ourselves so slow going to get these things launched, please get in touch if you wish to discuss further.”

 

Dear all, Its Nina Muirhead here!

Thank you so much for all your support and Big Thanks to Andy for communicating. I've been very slow to get going with social media but am a fan of the group, just so limited on capacity. Today my wrists are agony from sending more than the usual number of e-mails yesterday. I'm also not great at reading some days so please don't post anything too long. Thanks Linda for helping us so much too.

The Cardiff University Study Team will generate a formal response but some short answers to questions that have come up:
1) This is designed to look at the impact on Family QoL using simple, short, set, validated, questionnaires so that ME/CFS can be compared with existing, validated data on other Families impacted by other disease including cancer. See FROM-16.
2) Sadly not approved for under 18 yrs but the interest has been noted and I do know many families with children so I do know there is a real need out there.
3) We do want to encourage as many as possible who have a family member to participate, but I know that an overwhelming proportion, and possibly some of our most severely affected, are alone and or isolated. The impact on all quality of life is important to us but other studies have shown this specifically for ME/CFS patients already. This is the first international research looking at impact on QoL of family members and is the aim of this specific piece of research.
4) All feedback and ideas for future research are being gratefully received.

 

My biggest fear is if my children get ME and we are no further forward.

 

Thank you, @EducateME. I've now done the patient section; I won't send on to anyone, as I don't think they'd know what to say.

 

Thank you @EducateME. Have completed, and Mr B the family member section too.

 

Firstly, thanks for the advocacy you do, particularly when you have to trade it against your health.
Secondly, this comment resonates greatly with me. It's bad enough not being able to be the parent I wanted to be, but the thought of one of them taking ill with ME and there being no effective treatment is quite scary.

 

There is also the very real concern for parents of children with ME. What happens to them should/ when parents die.
If nothing changes this is one of my biggest concerns ( family history of simply dropping dead )