Changes in IBD activity and quality of care following liver transplantation

Can you help shape and improve our questionnaire?

 

Dr Palak Trivedi and UK PSC are conducting research into how colitis activity may change following liver transplantation, and the level of information patients receive regarding this. Colitis-related symptoms vary from one individual to the next. For some, their IBD improves following liver transplantation whereas in others, bowel habit deteriorates significantly from what it used to be before.

 

In the study, potential factors that influence how colitis behaviour changes; from before to after liver transplantation will be studied. Equally, UK PSC and PSC Support are mindful that patients may not be fully informed of how liver transplantation can impact their colitis and how colitis could affect the newly transplanted liver.

 

To help answer some of these questions, we will conduct a detailed survey of the patient experience as relates to colitis control after liver transplantation, focusing on broad quality of life issues and whether patients feel they have received a satisfactory level of information. Can you help us improve the questions in the draft survey questionnaire below? UK-PSC and PSC Support would appreciate your feedback (scroll down to the end of the page). Additionally, if you are interested in becoming involved in the later stages of this research, or would like to know more, please email Dr Trivedi (palak.trivedi@dr.com)

Many thanks.

 

DRAFT QUESTIONNAIRE


Section One: General questions

  1. Current age:
    Years
  2. Sex:
    M/F
  3. Have you had a liver transplant:
    Y/N
  4. In what month and year was your 1st liver transplant:
    MM/YY
  5. At what age did you received your 1st liver transplant:
    Years
  6. Have you had more than one liver transplant:
    Y/N
  7. If more than 1, how many:
     
  8. In what month and year was your 2nd liver transplant:
    MM/YY
  9. At what age did you receive your 2nd liver transplant:
     
  10. In what month and year was your 3rd liver transplant:
    MM/YY
  11. At what age did you receive your 3rd liver transplant:
     
  12. Have you ever had a colonoscopy:
    Y/N
  13. Do you have a diagnosis of colitis (either Crohn’s colitis or ulcerative colitis):
    Y/N
  14. Have you ever had bowel surgery to remove your colitis (colectomy):
    Y/N
  15. In what month and year did you have your colectomy:
    MM/YY
  16. Who do you see for your colitis management?
    Hepatologist/Gastroenterologist/Both/Don't know

 

Section Two: Questions regarding colonoscopy for patients with colitis

  1. How often did you undergo colonoscopy after you were told you had PSC but before your liver transplant?
    (Delete as appropriate: only once / only based on symptoms / every five years / every three years / between one and two yearly / other – please specific):
  2. Have you undergone a colonoscopy after your liver transplantation?
    Y/N
  3. If not, why not?
    (Delete as appropriate: less than 12 months since previous colonoscopy / felt too unwell since liver transplantation was performed / do not know / personal choice / colectomy prior to liver transplant / other – please specific):
  4. Were you ever informed that the bowel preparation did not work so well?
    Y/N
  5. How often were you informed that the bowel preparation did not work so well?
    (Delete as appropriate: never / only once / more than once)
  6. What was the ‘action plan’ told to you by the doctor when the bowel prep did not work?
    (Delete as appropriate: to try the same again / to take the same bowel preparation over more days or with more liquid / to try a different bowel preparation / other – please specify).
  7. When you were told about the bowel preparation being inadequate, did the doctor advise you to have the colonoscopy repeated sooner than 12 months’ time?
    Y/N

 

Section Three: Questions regarding general quality of life after liver transplantation (modified from SF-36)

Choose one option for each questionnaire item.

1. In general, would you say your health is currently:

   Excellent

   Very good

   Good

   Fair

   Poor

 

2. Compared to 1 year before your liver transplant, how would you rate your health in general now?

   Much better now than one year ago

   Somewhat better now than one year ago

   About the same

   Somewhat worse now than one year ago

   Much worse now than one year ago

 

3. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?

 

Yes, limited a lot

Yes, limited a little

No, not limited at all

-  Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports

   1

   2

   3

-  Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf

   1

   2

   3

-  Lifting or carrying groceries

   1

   2

   3

-  Climbing several flights of stairs

   1

   2

   3

-  Climbing one flight of stairs

   1

   2

   3

-  Bending, kneeling, or stooping

   1

   2

   3

-  Walking more than a mile

   1

   2

   3

-  Walking several blocks

   1

   2

   3

-  Walking one block

   1

   2

   3

-  Bathing or dressing yourself

   1

   2

   3

 

4. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health?

 

Yes

No

-  Cut down the amount of time you spent on work or other activities

   1

   2

-  Accomplished less than you would like

   1

   2

-  Were limited in the kind of work or other activities

   1

   2

-  Had difficulty performing the work or other activities (for example, it took extra effort)

   1

   2


 

5. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

 

Yes

No

Cut down the amount of time you spent on work or other activities

   1

   2

Accomplished less than you would like

   1

   2

Didn't do work or other activities as carefully as usual

   1

   2

 

6. During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbours, or groups?

   Not at all

   Slightly

   Moderately

   Quite a bit

   Extremely

 

7. How much bodily pain have you had during the past 4 weeks?

   None

   Very mild

   Mild

   Moderate

   Severe

   Very severe

 

8. During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)?

   Not at all

   A little bit

   Moderately

   Quite a bit

   Extremely

 

9. These questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling.

How much of the time during the past 4 weeks...

 

All of the time

Most of the time

A good bit of the time

Some of the time

A little of the time

None of the time

Did you feel full of pep?

   1

   2

   3

   4

   5

   6

Have you been a very nervous person?

   1

   2

   3

   4

   5

   6

Have you felt so down in the dumps that nothing could cheer you up?

   1

   2

   3

   4

   5

   6

Have you felt calm and peaceful?

   1

   2

   3

   4

   5

   6

Did you have a lot of energy?

   1

   2

   3

   4

   5

   6

Have you felt downhearted and blue?

   1

   2

   3

   4

   5

   6

Did you feel worn out?

   1

   2

   3

   4

   5

   6

Have you been a happy person?

   1

   2

   3

   4

   5

   6

Did you feel tired?

   1

   2

   3

   4

   5

   6

 

10. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)?

   All of the time

   Most of the time

   Some of the time

   A little of the time

   None of the time

 

11. How TRUE or FALSE is each of the following statements for you.

 

Definitely true

Mostly true

Don't know

Mostly false

Definitely false

I seem to get sick a little easier than other people

   1

   2

   3

   4

   5

I am as healthy as anybody I know

   1

   2

   3

   4

   5

I expect my health to get worse

   1

   2

   3

   4

   5

My health is excellent

   1

   2

   3

   4

   5


 

 

Section Four: Questions regarding IBD on quality of life in the 12 months BEFORE liver transplantation (modified SIBDQ)

To be re-answered/repeated based on pt. experience 3 – 24 months after LT

1.          How often has the feeling of fatigue or of being tired and worn out been a problem for you:

Please pick one option from

o  All of the time

o  Most of the time

o  A good bit of the time

o  Some of the time

o  A little of the time

o  Hardly any of the time

o  None of the time

2.          How often have you had to delay or cancel a social engagement because of your bowel problem? Please choose an option from:

o  All of the time

o  Most of the time

o  A good bit of the time

o  Some of the time

o  A little of the time

o  Hardly any of the time

o  None of the time

3.          How much difficulty have you had, as a result of your bowel problems, doing leisure or sports activities you would have liked to have done? Please choose an option from:

o  A great deal of difficulty, activities made impossible

o  A lot of difficulty

o  A fair bit of difficulty

o  Some difficulty

o  A little difficulty

o  Hardly any difficulty

o  No difficulty; the bowel problems did not limit sports or leisure activities

4.          How often during have you been troubled by pain in the abdomen? Please choose an option from:

o  All of the time

o  Most of the time

o  A good bit of the time

o  Some of the time -A little of the time

o  Hardly any of the time

o  None of the time

5.          How often have you felt depressed or discouraged? Please choose an option from

o  All of the time

o  Most of the time

o  A good bit of the time

o  Some of the time

o  A little of the time

o  Hardly any of the time

o  None of the time

6.          Overall, how much of a problem have you had passing large amounts of gas? Please choose an option from:

o  A major problem

o  A big problem

o  A significant problem

o  Some trouble

o  A little trouble

o  Hardly any trouble

o  No trouble

7.          Overall, how much of a problem have you had maintaining or getting to the weight you would like to be? Please choose an option from:

o  A major problem

o  A big problem

o  A significant problem

o  Some trouble

o  A little trouble

o  Hardly any trouble

o  No trouble

8.          How often have you felt relaxed and free of tension? Please choose an option from

o  None of the time

o  A little of the time

o  Some of the time

o  A good bit of the time

o  Most of the time

o  Almost all of the time

o  All of the time

 

 

9.          How much of the time have you been troubled by a feeling of having to go to the toilet even though your bowels were empty? Please choose an option from

o  All of the time

o  Most of the time

o  A good bit of the time

o  Some of the time

o  A little of the time

o  Hardly any of the time

o  None of the time

10.        How much of the time during have you felt angry as a result of your bowel problem? Please choose an option from

o  All of the time

o  Most of the time

o  A good bit of the time

o  Some of the time

o  A little of the time

o  Hardly any of the time

o  None of the time

 


Please share your thoughts on the above draft questionnaire