Covid 19 patient impact survey

1. When did you first hear about the Covid 19 pandemic?

January
February
March
April
May
June

2. Are you:

Male
Female
Gender neutral
Other
Prefer not to say

3. Age:

16-24 years
25-34 years
35-44 years
45-54 years
55-64 years
65-74 years
75+ years

4. What is your ethnicity?

Asian or Asian British
Black or Black British
Chinese or other ethnic group
Mixed
White
Prefer not to say

5. Please select the IBD diagnosis that applies to you:

Ulcerative Colitis
Crohn's disease
IBDU (inflammatory bowel disease unclassified)
Microscopic colitis (Lymphocytic or collagenous colitis)

6. How long have you been an IBD patient?

0-2 years
3-5 years
6-10 years
11-20 years
21 years +

7. Please select the medication(s) that you were taking at the start of the Covid-19 pandemic. Please select all that apply

8. Did your medication change during the Covid 19 pandemic?

Yes-please ensure you answer questions 11 through to 40
No

Please select the medication(s) that were stopped during the COVID-19 pandemic. Please select all that apply.

11. Budesonide tablets (Entocort/Cortiment/Budenofalk)
12. Budesonnide enema/foam (Budenofalk)
13. Mesalazine tablets (Pentasa/Asacol/Octasa/Salafalk/Mesavant)
14. Mesalazine supppositories/foam/enemas (Pentasa/Asacol/Salafalk)
15. Sulfasalazine
16. Azathioprine/6-Mercaptopurine/Methotrexate
17. Infliximab (Remsima/Remicade/Flixabi/Inflectra)
18. Adalimumab (Humira/Imraldi)
19. Golimumab (Simponi)
20. Ustekinumab (Stelara)
21. Vedolizumab (Entyvio)
22. Tofacitinib (Xeljanz)
23. Hydrocortisone infusion for flare

Please select the medication(s) that were started during the Covid-19 pandemic. Please select all that apply

39. Do you have any of the following conditions? Please select all that apply.

Diabetes
High blood pressure
Active or recent cancer treatment
Blood or bone marrow disorders
Severe lung conditions
Heart disease
Kidney disease
Liver disease
Neurological condition
Organ transplant recipient
Obesity with body mass index above 40
Currently pregnant
Depression /Anxiety
None of the above

40. Did you consider yourself in an at risk or vulnerable group for Covid 19?

Yes
No

41. Did you receive notification that you were in an at risk or vulnerable group for Covid 19 and to sheild or follow enhanced social distancing?

Yes
No

42. If you answered 'yes' to question 43, how were you notified? Please select all that apply

Letter
Email
Text message
Phone call
Notification not received
Not applicable to my situation

43. When did you first receive notification about sheilding?

March
April
May
June
Notification not received
Not applicable for my situation

44. Who did you receive notification from? Please select all that apply

Government by text, letter or email
GP surgery
Local hospital trust
IBD consultant team
IBD nursing team
Notification not received
Not applicable to my situation

45. How many times have you received a letter/text/email or phone call?

0
1
2
3
4
5
6
7
more than 8
Not applicable to my situation

Please select the statement that is most applicable to the information you have received

Where did you find further information if required and was this helpful?

55. Were there any obstacles for you to achieve sheilding or enhanced social distancing? Please select all that apply

Not required to shield or practice social distancing
No obstacles shielding or enhanced social distancing
Unable to shield at home due to housing situation
Unable to shield due to dependants
Unable to shield due to financial reasons (required to carry on working)
Chose not to follow Government Covid 19 advice
Not applicable to my situation

How concerned were you about your IBD care during the Covid 19 pandemic?

How were these aspects of your hospital IBD care affected during the Covid 19 pandemic?

How were these aspects of your GP IBD care affected during the Covid 19 pandemic?

74. During lockdown were you able to get hold of your IBD nursing team?

Yes
No
I did not need to contact the team

75. How did you contact your IBD team? Please select all that apply

Through the IBD help / Flare line
Through My Medical Record / email
Telephoning the secretaries
In writing
Through your GP or other community service

76. Was your call regarding the following? Please select all that apply

Flare
Covid-19 advice regarding IBD
Medication advice
Appointment advice
Investigations
Results

77. In your experience has the response time of your IBD team changed during the Covid-19 pandemic?

No change in response time
Quicker response time
Slight delay in response time
Long delay in response time
Unable to access IBD team

78. If you experienced an IBD flare during the Covid-19 pandemic, please tell us how you managed this? Please select all that apply

I did not flare
I managed my flare myself at home
I contacted my IBD help line
I contacted my GP surgery
I went to the Emergency Department
I was admitted to hospital by my IBD team
My GP organised treatment
My GP admitted me to hospital

79. Did you try to avoid coming to hospital due to Covid-19?

Yes
No
No applicable

80. Do you feel Covid-19 has had an impact on your quality of life?

Very positive impact
Positive impact
Neither positive nor negative impact
Negative impact
Very negative impact

Did Covid-19 have an impact on your mental wellbeing? Please select all that apply

Please answer the following questions on a scale of 1-10, where 1= no stress and 10 the most stressed you have ever felt

88. Have you or any member of your household had or currently have symptoms of Covid-19 (fever, cough, loss of smell or taste) during lockdown?

No symptoms
I have/had symptoms
Member(s) of my household have/had symptoms

89. If you had symptoms compatible with Covid-19 were you tested for Covid 19?

I had no symptoms compatible with Covid-19
I was tested and was negative
I was tested and was positive
I was unable to get a test
I did not want to get tested

90. If you have had symptoms compatible with Covid-19 or tested positive, did you... Please tick all that apply

Stay at home in self isolation
Contact your GP surgery/out of hours GP service for advice
Contact 111
Contact IBD help line
Attend Emergency Department
Admitted to hospital
Continued my IBD medication
Temporarily stopped my IBD medication
Permanently stopped my IBD medication

91. Please select which option best describes your status pre-lockdown. Please tick all that apply

Employed
Unemployed
Self employed
Part time student
Full time student
Unable to work due to disability
Full time parent
Retired
Full time carer

92. Please select which option best describes your status currently. Please tick all that apply

Employed
Unempoyed
Self employed
Part time student
Full time student
Unable to work due to illness/disability
Full time parent
Retired
Full time carer

93. How was your income affected by Covid-19?

My income was not affected
I was part of the Government furlough / self employment scheme
My income was reduced due to reduced working hours
I was on sick pay
I received no income due to a zero hour contract / ineligibility to self employment support
I had to rely on my family and friends
I prefer not to say

94. Please select the most appropriate statement that best describes the changes to your working day during the covid-19 pandemic.

Continued to work
Furloughed
Continued to work but with restrictions / alterations
Worked from home
I was made redundant
Unable to work
Not applicable to me

95. Do you provide the only income in your household?

Yes
No
Prefer not to say

How would you like to have IBD appointments in the future? Please select all that apply

102. If you have any further comments, please let us know:

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No

Thank you for taking the time to answer this survey.

Thank you