Open The Living With a Long-Term Condition Study (LTC), King's College London

[swearing deleted] Another questionnaire? Haven't we suffered enough?

 

As I guessed, it looks like a PhD project. The contact person has an MSc, and the groupies include Rona Moss-Morris as lead groupie, aka Principal Investigator.

 

10. I have just done the survey.

I confess I gave a false name and the phone number of a pest control company.

It's all the usual blah blah with questions they can twist to suit their prejudices.

 

I have now been sent the second stage survey. I have filled it in simply because I wanted to make a note of the questions, which I forgot to do first time around. Here it is:

7. Living with a long-term condition
It is normal to feel a range of emotions when living with a long-term physical health condition (LTC) or conditions (LTCs) (e.g. diabetes, heart conditions, respiratory conditions).
We are interested in how your long-term health condition(s) affects you. If you have multiple LTCs, you can answer based on the condition that impacts you most, or you can consider all your LTCs together if they have equal impact for you.
We would like to know how you have been feeling about your LTC in the past two weeks.


Never, rarely, sometimes, often, always

Finding aspects of my life with my LTC(s) distressing - eg symptoms, treatments, medical appointments, treatment side effects etc.

Able to live the life I want alongside my LTC

Feeling upset that my LTC prevents me doing things that are important to me

Feeling like I can cope emotionally with the challenges that my LTC brings

Feeling less confident in myself because of my LTC

Feeling angry or frustrated because of my LTC

Finding it difficult to accept my LTC

Feeling in control of my life

Feeling overwhelmed by my LTC eg symptoms, treatments, medical appointments, treatment side effects etc.

Feeling sad, down and/or hopeless because of my LTC

Feeling positive eg happy, excited, content despite my LTC

Feeling unhappy about aspects of how my body looks because of my LTC

Feeling nervous, anxious and/or worried because of my LTC

Finding it hard to think about anything other than my LTC

Worrying about how my LTC will progress in the future

Worrying about what my future will look like with my LTC

Feeling upset about aspects of how my body works because of my LTC

Feeling embarrassed and/or ashamed about my LTC and/or symptoms

Blaming myself for my LTC and/or symptoms

Feeling like a burden because of my LTC

Feeling lonely because of my LTC

Worrying about what other people think of me because of my LTC

Feeling there are people I can turn to for support

Finding it difficult to talk about my LTC

Worrying that I talk too much about my LTC

Feeling that no one understands my LTC

Feeling upset about how my LTC impacts some of my relationships egwith partner, family, friends

Feeling upset about how my LTC impacts my relationship with my culture/faith


We are aware that many people live with distress related to issues other than their LTCs. In addition to your answers on the previous page, please can you rate how much you feel your current distress is related to your LTC only (right-hand side) or to other life problems (left-hand side). If you feel distressed by both your LTC and other life problems, you can place the slider near the middle.

If you do not currently feel distressed, you can select the “not applicable” box below.

 

My response to this questionniare is that if you weren't feeling miserable about your life with a long term condition at the start of the survey, you are likely to by the end with all those negative emotions being asked about, and the few positive ones being out of reach not because of feeling negative, but because they are mostly about being able to live the life you want.

Take this pair of questions:

Feeling upset that my LTC prevents me doing things that are important to me
Feeling positive eg happy, excited, content despite my LTC

My life at the moment is fairly stable with no great upsets, so I would want to answer the first one that of course it's frustrating not being able to do simple things I'd like to do, but I find other things to do which are OK too.
But there's no way I would describe myself as happy, excited or content - again, who would be when you feel physically crap all the time and have to spend most of your life in bed, and are currently bashing your head against the brick wall that is Cochrane, thanks to the likes of the people doing this stupid questionnaire?

They are all leading questions. Why not just ask people to say for themselves what aspects of their LTC make their lives easier or more difficult and what emotions they feel. Oh, but of course that would require them to actually listen to people rather than just bunging box ticking questionnaires in a computer program and stats package and writing it up to get a doctorate as if it means something.

And another thing. What damn business is it of theirs what emotions I have about my disease. Unless I specifically ask for help with emotions I'm finding hard to deal with, what i feel is none of their damn business. If someone medical shoved this in front of me I would refuse to fill it in.