QUALITY OF LIFE

[Cateran]

Does anyone have an issue with questionnaires where you are asked to tick boxes about your health condition, perhaps before or after a visit to a chest clinic? I can appreciate questions about your biological condition as feedback for the consultant or nurse. However, what is the motive for asking about how you feel emotionally or socially, if you are happy or not with your illness? Seems rather pointless to me.

[sassy59]

Hi Cateran, I don’t feel those questions you mention are pointless to be honest. Many go through a roller coaster of emotions on hearing they have lung disease. They can be left feeling anxious and afraid of what the future holds.

Some don’t want to go out and instead stay cooped up indoors where they feel safer and won’t be stared at. Quality of life is very important, it’s not always just about how long you may have left.

Enjoy your day. Xxxx

[Cateran in reply to sassy59]

I couldn't agree more with you sassy59 about the roller coaster of emotions. My feeling is that the QOL questionnaire isn't very helpful and seems not to capture what you are experiencing about bad news, not in any clinical sense, so what is its purpose? Yes, you want to get out there and not give in to life, but the questions seem to be about rather vague tick boxes on well-being, satisfaction with your life, happiness, and meaning in life, all rather vague and with not enough time to complete with accurate feedback to the clinicians. You do not feel any better after the exercise than you did before. I am left rather bewildered with the questionnaire and still unsatisfied with its pointlessness.

They seem to want you to be spontaneous, of the moment, and that doesn't work for me when I am still reeling from the kind of reactions which you so well describe Sassy59. The entire exercise feels somewhat routine. I wonder if any professional really sifts through the feedback. Then again, if they do what can they advise for you, or prescribe for you, other than more happy pills and other potions? The exercise feels all rather ad hoc to me, padded out in the questionnaire.

[sassy59 in reply to Cateran]

Fair enough Cateran but perhaps some people get something out of completing the questionnaire. Each to their own I suppose. I’ve no idea if the professionals read the feedback but they certainly should.

Writing things down can be easier than speaking about a difficult diagnosis so is certainly helpful to some.

I hope you are keeping as well as you possibly can. Take care xxxx

[Yatzy]

I like questionnaires, in fact I think I might be addicted to them! I do YouGov every week!

I think the medical ones you mention are maybe trying to acknowledge the latest NHS trend to try to support mental health around health issues. So I’m glad to help out, perhaps they’ll improve as we go along 🌈

[Cateran in reply to Yatzy]

Good point Yatzy about possible improvement by NHS of their questionnaires. I reckon not all patients will be addicted to them but you raised a smile to my face. There is scope for improvement and I know that some clinician researchers are engaging in just that. I am involved in one trial in Dundee as a volunteer patient, so we will see how we get on making these questionnaires more accessible. Thank you Yatzy and to Sassy for your comments, they are each valid and worth looking into as a hint of problems which might arise as I engage with my trial.

[Yatzy in reply to Cateran]

Sounds like a good opportunity to move the paperwork forward....do your best! Hoping your extra attention as a patient does you some good too. Good luck 😉

[katieoxo60]

Yes I feel they take up a lot of time, like you say. But they are aimed at assessing your emotional outlook on your illness & disability.

[Cateran in reply to katieoxo60]

Thank you katieoxo60 and I see what you mean. My feeling is that a patient's emotional outlook is not well served by the wording of the questions nor is it an objective or valid response by the clinician.The entire exercise has a subjective feel about it. The questions are not designed to assess the categories of well-being which they purport to. A patient can leave the consultation contented and then get home to feel quite differently. The questionnaires seem to be time-laden and invite spontaneity because authentic of the moment, whereas the feedback is not valid later with the patient. The entire QOL exercise feels like an add-on to the consultation, which has been a measure of your physical and biological condition not your mental state, such as anxiety about breathing or swallowing or balance.So, has the questionnaire served its purpose if the categories are so vague, for example: Happiness.

[katieoxo60 in reply to Cateran]

Sorry for delayed response, have been away for a few days to recharge the batteries. The vast majority of questionaires do not capture the essence of a persons emotional state as they are too tick box & vague. Some people cope with emotions better than others do and it is wrong to presume that because someone did not cope in the past that they can't now. Emotions change with maturity too. So ones happiness perspective might be different. What do the survey reveiwers see as happiness?? At present I am sad at loss of family and freinds due to death, but doesn't mean I can't cope it is a normal reaction to be sad , emotional impairment is when you can't express feelings or have inappropriate reactions to your situation. It is too complex to assess by tick box or even short verbal interveiws and no knowledge of the persons general demeanor. Sorry I am going on again but this conversation is very interesting .

[Cateran in reply to katieoxo60]

Thanks again katieoxo60 for your comments on the shortcomings of some questionnaires. Yes they are elusive in what they do not capture about a patient's emotional status, which is never set in stone and changes as events impact on us and change us.

[Ergendl]

Depending on the clinic and questionnaire, your replies may be compared with previous replies to gauge how your illness is continuing to affect you.

I've signed on for a 10 year dementia research project where I play computer games once a year to help the researchers assess whether I'm heading towards a dementia diagnosis. Before each gaming session I'm asked the same questions about how I feel, whether I'm tired, etc, as these factors can affect how I complete the games. While my own results alone may not be significant, being one in a cohort of 4000, it may make a difference to the researchers learning how to identify dementia early.

[Cateran in reply to Ergendl]

I am full of admiration for your research into dementia Ergendl. The cohort of 4000 and the length of the trial are very reassuring validation criteria. Gaming is not my forte. I struggle with this format for engaging with the BL forum, and as for counting down by seven from one hundred backwards...ouch!

Yes, it does depend on the clinic, which in my case is a bronchiectasis referral, and the questionnaire (QOL-B) though I have seen other formats like the Leicester Cough Questionnaire, that is marginally better for my purposes. Dementia does seem to be testing for biological based engagement with factors affecting the vascular system and the brain, including stroke conditions, rather than the purely emotional categories of QOL, so your tiredness does count and what is more can be measured other than nominal methods, by numerical degrees of diminution. So I am curious: is the trial looking for a written response to the question of your tiredness, or a tick-box reply? If the latter then why and how would that be coded for the researcher? What would be a degree of tiredness? A cut-off point where you are no longer tired?

[Ergendl in reply to Cateran]

It is measured on a graded 1-10 hedonistic slide with opportunities to explain further in a text box. These are compared each time. I can see the difference in my gaming performance when I'm tired as opposed to when I'm alert and all's well with the world, so the slide scales are relevant to the research.

[Cateran in reply to Ergendl]

Ah. The pleasure principle, Ergendi . Jeremy will be pleased, but what is "all's well with the world" when you are alert, registered on that sliding scale? You say "relevant to the research" yet what we may have to take into account is the validity of the terms of reference framing the study. the overall mind frame about "happiness" and the elderly with dementia symptoms which guides the researcher(s). I am aware that investors think about hedonism and the profit principle (on a utilitarian scale of reference) but clinical researchers will have a quite different reference. I recall a Scottish comedian's quip: What's the point of happiness? It can't buy you money. (Lex Maclean) So your sliding scale may not be unflawed if it is attempting to register your biopsychological condition on the treadmill of your gaming performance. Bentham may have had it right as a generalisation in philosophy and social science but not if clinical researchers are seeking accurate knowledge about dementia. Happiness is an elusive term for elderly patients.

[Superzob]

Im afraid I have a rather skeptical view of these questionnaires. Having had prostatitis and the associated pain for 24 years, I get pretty fed up with being asked how many times I get up at night, when it's completely irrelevant to the problem. I would be less skeptical if I felt there was some positive use being made of the answers, rather than them being what appears to be a completely academic exercise.

This is completely different to Ergendl's case where you know that the researchers are actually going to make use of the answers, otherwise they wouldn't be very good researchers! I don't think the NHS has the resources to properly analyse the answers, so they might be better off freeing up the time to carry out their main function, rather than pretending they are looking after the patient's welfare by asking inane questions.

Sorry if this seems very cynical, but then I am!

[Cateran in reply to Superzob]

It is difficult not to be cynical in some respects when faced with the type of questionnaire that you describe Superzob. Some of these exercises in feedback do feel like they are just going through the motions and are not truly delivering the goods or purpose of the questionnaire. I would say that some are better than others at teasing out the necessary information from which one might build a clinical series of next steps, but these steps need to be linked to real progress in the respective treatment of your condition. Like you, I am not sure that this is always the case, especially when questionnaires don't seem to reflect the learning from previous feedback from patients, do not seem to have improved. Which is why I posed my original question about the deficiencies in QOL forms.