Survey to Research Overall Wellbeing in Thyroid Disease

[lynmynott]

Cira Fahey is conducting a survey for thyroid patients:

My name is Cira Fahey I am currently in my final year of my BA Psychology degree at Dublin Business School in Ireland. As a part of my work I have been asked to complete a study of my choice. This research is contributing to my thesis and is overseen by a lecturer and head of my Psychology department in the college. It has been also been approved by an ethics board to go ahead.

Having dealt with thyroid dysfunctions growing up and learning a lot through trial and error with medications I felt that this would be an opportunity to further research how other patients with it feel and perceive the medical condition.

I am currently looking to gather responses to research Overall Well-being of females with either Hypothyroidism or Hyperthyroidism. This will be done using a short survey linked below.

All data in this survey will be anonymous.

The participants needed are:

-females over 18

-Not pregnant

-Not taking antidepressants or other illicit drugs

It would be greatly appreciated if you would participate in this survey.

Link to Survey: goo.gl/forms/b0DLOr5MjyydDsyG2

[lady_eve]

Done. It's anonymous and painless. The questions are interesting.

[MaisieGray]

Half way through I became so angry with this "survey" that I stopped. The questions are nonsensical and irrelevant to thyroid disease, and it doesn't manage to avoid even the most basic of survey flaws. If this is the quality of work coming through, I despair.

[greygoose in reply to MaisieGray]

It is incredible that so few people know how to write a good survey. Possibly because they haven't experienced them from both sides - the asking and the answering?

[SeasideSusie Remembering in reply to MaisieGray]

I agree MG. I did exactly the same as you, abandoned the survey a couple of pages in when the questions became irrelevant.

[Hidden in reply to MaisieGray]

I agree with you Maisie Gray.As I progressed through the questions I began to wonder what relevance it had on this forum and abandoned it.

[LAHs in reply to MaisieGray]

That's funny I didn't get that impression, it's amazing the patterns you can pull out of a pile of data even when at first or intuitively you do not see any relevancy. Maybe some of the unusual questions asked are factors of the researchers interests. All sorts of weird things are sometimes thrown into surveys for example asking for the explosive "socio/economic class" or your income. The more info you have, the better and some analyses can produce amazing results, of course the cause and effect will always need further analysis.

Anyway miss Cira Fahey I hope you get good results, statistics is great fun, let us know your results once you have sorted it all out.

[lady_eve in reply to LAHs]

I didn't get this negative impression, either. I'm wondering what I 'missed' ...

[DippyDame in reply to MaisieGray]

I agree MaisieGray , I gave up but thought it was probably just me.....clearly not!

[Angel_of_the_North in reply to MaisieGray]

Well, it is from a psychology department. Perhaps she'll discover than people on T3 and NDT are happier than those on levo only - but it's more likely to show that people with certain character "defects" think their disease is worse than those without them.

[wellness1]

I haven't looked at the survey, but the description of eligible participants contains this phrase:

'Not taking antidepressants or other illicit drugs'

However some people may feel about them, antidepressants are not illicit drugs. This wording may alienate some people. I suggest deleting the word 'other'.

Not a criticism, just pointing this out as a helpful suggestion to Cira Fahey.

[MaisieGray in reply to wellness1]

Yes I noticed that, and it is one of the basic survey flaws I referred to. If these things are going to be approved for posting here, there should at least be a quality control check by ThyroidUK that it's worth our effort. But more importantly, if this is an example of the quality that is being approved by the student's tutors, it doesn't bode well for medical science and patients.

[LAHs in reply to wellness1]

Yes, I noticed that too but she is young, don't be so harsh. I am sure she will fix the little imperfections.

[MaisieGray in reply to LAHs]

It isn't about being harsh, and it isn't about little imperfections. Its about getting the basics right, and any fixing has to be done before you issue the questionnaire, it can't be done afterwards.

[wellness1 in reply to LAHs]

Hi LAHs, do you think I was being harsh? I did say I was offering advice (deleting the word 'other') as a helpful suggestion.

[LAHs in reply to wellness1]

Absolutely not, you made an accurate observation. I have worked with a lot of young people in universities and they do a lot of daft things, I just feel for them when a section of society jumps all over them, it really hurts. The young can be easily discouraged, when students stick their necks out about the subject they love just make allowances if they make little boo boos.

[wellness1 in reply to LAHs]

Thanks for sharing this insight garnered from your experience working with young people. The idea that they can be easily discouraged is good to bear in mind. Hopefully the adults who teach, work with and mentor them will guide their work and help them to set high standards to better prepare them for work in the adult world.

[loueldhen]

I was looking forward to the ‘do you have any further comments bit’ sadly not there. There is so much more than the 1-10scales. If I’d answered this 5years ago it would have been so different because I didn’t understand my hypothyroid treatment/illness were killing me. All solved with t3 treatment. I went to a thyroid support group a couple of weeks ago. It made me want to form a militant arm of the campaign. So many commonalities. So much waste. So little understanding and support from endos and gps. There are answers.

[Tina_Maria]

I have to agree with others here, the questions are not relevant to hypo or hyperthyroidism.

‘If you had to live your life again, would you make the same choices’ ??? What on earth has that got to do with thyroid disease?

Very poorly designed questionnaire and execution, I seriously wonder how this even got ethical approval.

[Kell-E in reply to Tina_Maria]

If you had your life to live over again you would clearly get appropriate thyroid treatment earlier, lol. So that's a clear YES, er, or should that be a NO because now that you have appropriate thyroid treatment you are living a delusional happy life and wouldn't change a thing? Maybe the test was to see how impatient thyroid patients are with surveys? Because that would have produced results!

[MaisieGray in reply to Kell-E]

I'm not at all impatient with quality surveys per se; I am however, impatient with people wasting my time with ill thought out or odd questionnaires.

[Kell-E in reply to MaisieGray]

Yeah, no kidding...I quit pretty early on with this one...

[lady_eve in reply to Tina_Maria]

My feeling on this is two-fold. Firstly, isn't there some correlation to be made between life choices, chronic stress, adrenal fatigue and thyroid function? (Don't @ me, I realise that stress alone cannot cause hypothyroidism.)

Secondly, if I had known at age 14, 21 or 28 that I would be unable to work or to participate in anything approaching a 'normal' life from the age of 32 onwards due to a miserable, misunderstood, energy-limiting chronic illness, I certainly would have made different choices.

Don't let's discourage anyone making any attempt to understand things better.

[Kipsy]

I’d have happily helped out but having scrolled down the comments from members, I won’t be bothering.

[LAHs]

How about if she finds out that severely depressed people who would change everything about their lives if they had the chance and had very low self esteem have minimal thyroid problems and are perfectly treated with 10mcg Levo? Come on, it's psychology, it's hard to formulate rules, you have to look at all sorts of unusual factors, stop thinking inside the box guys.

[Angel_of_the_North in reply to LAHs]

I've edited a few theses in my time and you might be surprised at some of the conclusions they come to in spite of seeing the quotes from patients. If you'd seen the comments from academic supervisors, you also know that often you have to agree with the status quo (at least largely) or you won't get your degree

[LAHs in reply to Angel_of_the_North]

Yes, that's scary isn't it. I have had two friends that ran into that buzz saw. I prefer to stand my ground, truth still matters.

[virtualreality]

Thanks for sharing this survey lynmynott , I've filled it out and good luck to Cira with her BA project.

I do share the frustrations expressed by others about the restrictive format of questionnaires in research, though - especially when the topic is something like patient experience. The approach taken in this study is not at all unusual. Whilst I understand the reasons and incentives for using these kinds of scales in research (I'm an academic psychologist), I can't help feeling they risk missing so much of importance.

What I do find hugely encouraging is that Cira and her project supervisors are interested in and actively working on questions to do with the experiences of people with thyroid disease. No research study is ever perfect, but if it's a sign of any kind of momentum in the field then I'll take that as a positive!