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

Andy

Andy

Retired committee member
Study Overview

Brief Summary

Psychological distress (anxiety and depression) is common in and experienced differently by people living with long-term health conditions (LTCs). Being able to measure whether psychological distress is related to living with a LTC would allow researchers and clinicians to provide interventions specifically tailored to the challenges of living with a LTC and therefore provide the most appropriate support for these patients. Such a measure would also be useful in research to identify the presence of illness-related distress in different patient groups. This project will therefore create a new measure of illness-related distress that has applications for both research and clinical practice. This will involve the psychometric validation of the new illness-related distress measure to test how valid and reliable the measure is.

The aim of the project is to provide initial validation of the Illness Related Distress Scale in a community sample, recruited through online platforms. The objective of the study is to gather initial validity and reliability data for the scale.

https://clinicaltrials.gov/study/NCT06072287
 
Being able to measure whether psychological distress is related to living with a LTC would allow researchers and clinicians to provide interventions specifically tailored to the challenges of living with a LTC and therefore provide the most appropriate support for these patients.
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Anti-depressants?

Edit : Just in case it wasn't obvious my reply was intended to be sarcastic.
 
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Trish said:
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.
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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.

Graphic.php

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.
 
Also: I would never complete a questionnaire like this. It's so obviously loaded to achieve an outcome and I'm sure this is a common sentiment, so they are basically getting the equivalent of an astrology questionnaire in an astrology magazine, which is obviously more likely to be filled by people who think astrology is great and powerful.

It's really sad how they are so willing to get the answers they want that they're willing to trash the credibility of an entire profession. Even more bizarre is that this profession absolutely loves it. I don't get it.
 
Trish said:
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.

Graphic.php

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.
Click to expand...


So naughty,…..

effectively no one who is NOT distressed can report it or be counted.

it gets turned into ‘not applicable’ so they tick it meaning not distressed (as the survey dictates) but then later it gets inferred to mean something different?

I’d hope we remember to red flag whether they provide the raw numbers on the ‘not applicable’ assuming this means ‘not distressed’ in their chart of results etc when they do report?
 
Trish said:
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.
Click to expand...


There is actually research papers confirming what you suggest in your first para. I remember finding it when I looked for examples relating to a paper over a year ago but can’t remember the terms I used where loads came up. Too exhausted to manage to have ever found them again though annoyingly

Something like repetition of specific questions affects answers, and other papers noting it can influence mood or answers given ie training people into different answers. Or using long surveys to change peoples thinking etc


st distressed to get the worst scores from the most ill
 
found it being 'advertised' charity website (PAPAA-The Psoriasis and Psoriatic Arthritis Alliance)

upload_2023-12-1_11-12-2.jpeg
The living with a long-term condition study

WHY? People who live with long-term conditions (LTCs), such as MS, often experience emotional difficulties related to their physical health. Researchers at King’s College London have developed a new questionnaire to measure emotional distress related to living with a LTC to help healthcare practitioners identify people who might need support.

WHO? They are looking for people who are:

  • 18 years old or over
  • Based in the UK
  • Have a long-term condition (e.g., MS, and/or any other long-term health condition)
WHAT? The study involves completing two short (10 minutes; 5 minutes) online questionnaires, 1 week apart. Everyone who completes the study will be entered into the draw to win 1 of 5 x £100 vouchers.

HOW? You can participate through this link.

If you have any questions, please get in touch with the team at LTC-Study@kcl.ac.uk
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https://www.papaa.org/news/current-features/recruits-needed/
 
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